acceptable use policy research paper

Improving Compliance with the Acceptable Usage Policy

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• Gcobisa Precious Flack 10 , 10 ,
• Elmarie Kritzinger 10 &
• Marianne Loock 10  

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To compete and survive in today’s competitive business world organizations continue to focus investment on information systems and technology. The protection of these information assets is crucial as business information resides in them. Organizations have placed reliance on technology controls such as firewalls, antivirus, intrusion detection, intrusion prevention, etc. as a control measure to protect these systems. The technical controls provide only a technical solution. Organizations must not only use technology controls as a protection strategy but design a holistic approach to protect their information assets. The holistic approach includes; technology, people, and processes. Information is used by people to perform their duties and employees should understand their roles and responsibilities.

The Acceptable Usage Policy (AUP) clearly defines employee roles and responsibilities. The AUP is a guiding policy for employees’ expected behavior when using the organizations’ information and information assets. The behavior of employees is crucial to the safety of business information as it can protect the information or expose it to danger. A policy such as an AUP must exist to guide the behavior of employees. Employee compliance with AUP can increase the safety of business information.

The main objective of this study was to focus on improving compliance with the AUP. Various factors have been identified as contributors to employee compliance with the AUP. The AUP compliance factors not only increase the compliance but also assist organizations in understanding the needs of employees that will assist them to comply with the AUP.

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Flack, G.P., Kritzinger, E., Loock, M. (2021). Improving Compliance with the Acceptable Usage Policy. In: Silhavy, R. (eds) Informatics and Cybernetics in Intelligent Systems. CSOC 2021. Lecture Notes in Networks and Systems, vol 228. Springer, Cham. https://doi.org/10.1007/978-3-030-77448-6_61

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• Review Article
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• Published: 19 February 2019

The dos and don’ts of influencing policy: a systematic review of advice to academics

• Kathryn Oliver   ORCID: orcid.org/0000-0002-4326-5258 1 &
• Paul Cairney 2  

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Many academics have strong incentives to influence policymaking, but may not know where to start. We searched systematically for, and synthesised, the ‘how to’ advice in the academic peer-reviewed and grey literatures. We condense this advice into eight main recommendations: (1) Do high quality research; (2) make your research relevant and readable; (3) understand policy processes; (4) be accessible to policymakers: engage routinely, flexible, and humbly; (5) decide if you want to be an issue advocate or honest broker; (6) build relationships (and ground rules) with policymakers; (7) be ‘entrepreneurial’ or find someone who is; and (8) reflect continuously: should you engage, do you want to, and is it working? This advice seems like common sense. However, it masks major inconsistencies, regarding different beliefs about the nature of the problem to be solved when using this advice. Furthermore, if not accompanied by critical analysis and insights from the peer-reviewed literature, it could provide misleading guidance for people new to this field.

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Introduction.

Many academics have strong incentives to influence policymaking, as extrinsic motivation to show the ‘impact’ of their work to funding bodies, or intrinsic motivation to make a difference to policy. However, they may not know where to start (Evans and Cvitanovic, 2018 ). Although many academics have personal experience, or have attended impact training, there is a limited empirical evidence base to inform academics wishing to create impact. Although there is a significant amount of commentary about the processes and contexts affecting evidence use in policy and practice (Head, 2010 ; Whitty, 2015 ), the relative importance of different factors on achieving ‘impact’ has not been established (Haynes et al., 2011 ; Douglas, 2012 ; Wilkinson, 2017 ). Nor have common understandings of the concepts of ‘use’ or ‘impact’ themselves been developed. As pointed out by one of our reviewers, even empirical and conceptual papers often routinely fail to define or unpack these terms—with some exceptions (Weiss, 1979 ; Nutley et al., 2007 ; Parkhurst, 2017 ). Perhaps because of this theoretical paucity, there are few empirical evaluations of strategies to increase the uptake of evidence in policy and practice (Boaz et al., 2011 ), and those that exist tend not to offer advice for the individual academic. How then, should academics engage with policy?

There are substantial numbers of blogs, editorials, commentaries, which provide tips and suggestions for academics on how best to increase their impact, how to engage most effectively, or similar topics. We condense this advice into 8 main tips, to: produce high quality research, make it relevant, understand the policy processes in which you engage, be accessible to policymakers, decide if you want to offer policy advice, build networks, be ‘entrepreneurial’, and reflect on your activities.

Taken at face value, much of this advice is common sense, perhaps because it is inevitably bland and generic. When we interrogate it in more detail, we identify major inconsistencies in advice regarding: (a) what counts as good evidence, (b) how best to communicate it, (c) what policy engagement is for, (d) if engagement is to frame problems or simply measure them according to an existing frame, (e) how far to go to be useful and influential, (f) if you need and can produce ground rules or trust (g) what entrepreneurial means, and (h) how much choice researchers should have to engage in policymaking or not.

These inconsistencies reflect different beliefs about the nature of the problem to be solved when using this advice, which derive from unresolved debates about the nature and role of science and policy. We focus on three dilemmas that arise from engagement—for example, should you ‘co-produce’ research and policy and give policy recommendations?—and reflect on wider systemic issues, such as the causes of unequal rewards and punishments for engagement. Perhaps the biggest dilemma reflects the fact that engagement is a career choice, not an event: how far should you go to encourage the use of evidence in policy if you began your career as a researcher? These debates are rehearsed more fully and regularly in the peer-reviewed literature (Hammersley, 2013 ; de Leeuw et al., 2008 ; Fafard, 2015 ; Smith and Stewart, 2015 ; Smith and Stewart, 2017 ; Oliver and Faul, 2018 ), which have spawned narrative reviews of policy theory and systematic reviews of the literature on the ‘barriers and facilitators’ to the use of evidence in policy. For example, we know from policy studies that policymakers seek ways to act decisively, not produce more evidence until it speaks for itself; and, there is no simple way to link the supply of evidence to its demand in a policymaking system (see Cairney and Kwiatkowski, 2017 ). We draw on this literature to highlight inconsistencies and weaknesses in the advice offered to academics.

We assess how useful the ‘how to’ advice is for academics, to what extent the advice reflects the reality of policymaking and evidence use (based on our knowledge of the empirical and theoretical literatures, described more fully in Cairney and Oliver, 2018 ) and explore the implications of any mismatch between the two. We map and interrogate the ‘how to’ advice, by comparing it with the empirical and theoretical literature on creating impact, and on the policymaking context more broadly. We use these literatures to highlight key choices and tensions in engaging with policymakers, and signpost more useful, informed advice for academics on when, how, and if to engage with policymakers.

Methods: a systematic review of the ‘how to’ literature

Systematic review is a method to synthesise diverse evidence types on a clear defined problem (Petticrew and Roberts, 2008 ). Although most commonly associated with statistical methods to aggregate effect sizes (more accurately called meta-analyses), systematic reviews can be conducted on any body of written evidence, including grey or unpublished literature (Tyndall, 2008 ). All systematic reviews take steps to be transparent about the decisions made, the methods used to identify relevant evidence, and how this was synthesised to be transparent, replicable and exhaustive (resources allowing) (Gough et al., 2012 ). Primarily they involve clearly defined searches, inclusion and exclusion processes, and a quality assessment/synthesis process.

We searched three major electronic databases (Scopus, Web of Science, Google Scholar) and selected websites (e.g., ODI, Research Fortnight, Wonkhe) and journals (including Evidence and Policy, Policy and Politics, Research Policy), using a combination of terms. Terms such as evidence and impact were tested to search for articles explaining how to better ‘use’ evidence, or how to create policy ‘impact’. After testing, the search was conducted by combining the following terms, tailored to each database: ((evidence or science or scientist or researchers or impact), (help or advi* or tip* or "how to" or relevan*)) policy* OR practic* OR government* OR parliament*). We checked studies on full text where available and added them to a database for data-extraction. We conducted searches between June 30th and August 3rd 2018. We identified studies for data extraction when they covered these areas: Tips for researchers, tips for policymakers, types of useful research / characteristics of useful research, and other factors.

We included academic, policy and grey publications which offered advice to academics or policymakers on how to engage better with each other. We did not include: studies which explored the factors leading to evidence use, general commentaries on the roles of academics, or empirical analyses of the various initiatives, interventions, structures and roles of academics and researchers in policy (unless they offered primary data and tips on how to improve); book reviews; or, news reports. However, we use some of these publications to reflect more broadly on the historical changes to the academic-policy relationship.

We included 86 academic and non-academic publications in this review (see Table 1 for an overview). Although we found reports dating back to the 1950s on how governments and presidents (predominantly UK/US) do or do not use scientific advisors (Marshall, 1980 ; Bondi, 1982 ; Mayer, 1982 ; Lepkowski, 1984 ; Koshland Jr. et al., 1988 ; Sy, 1989 ; Krige, 1990 ; Srinivasan, 2000 ) and committees (Sapolsky, 1968 ; Wolfle, 1968 ; Editorial, 1972 ; Walsh, 1973 ; Nichols, 1988 ; Young and Jones, 1994 ; Lawler, 1997 ; Masood, 1999 ; Morgan et al., 2001 ; Oakley et al., 2003 ; Allen et al. 2012 ). The earliest publication included was from 1971 (Aurum, 1971 ). Thirty-four were published in the last two years, reflecting ever increasing interest in how academics can increase their impact on policy. Although some academic publications are included, we mainly found blogs, letters, and editorials, often in high-impact publications such as Cell, Science, Nature and the Lancet. Many were opinion pieces by people moving between policy officials and academic roles, or blogs by and for early career researchers on how to establish impactful careers.

The advice is very consistent over the last 80 years; and between disciplines as diverse as gerontology, ecology, and economics. As noted in an earlier systematic review, previous studies have identified hundreds of factors which act as barriers to the uptake of evidence in policy (Oliver et al., 2014 ), albeit unsupported by empirical evidence. Many of the advisory pieces address these barriers, assuming rather than demonstrating that their simple advice will help ease the flow of evidence into policy. The pieces also often cite each other, even to the extent of using the exact phrasing. Therefore, the combination of previous academic reviews with our survey of ‘how to’ advice reinforces our sense of ‘saturation’, in which we have identified all of the most relevant advice (available in written form). In our synthesis, using thematic analysis, we condense these tips into 8 main themes. Then, we analyse these tips critically, with reference to wider discussions in the peer-reviewed literature.

Eight key tips on ‘how to influence policy’

Do high quality research.

Researchers are advised to conduct high-quality, robust research (Boyd, 2013 ; Whitty, 2015 ; Docquier, 2017 ; Eisenstein, 2017 ) and provide it in a way that is timely, policy relevant, and easy to understand, but not at the expense of accuracy (Havens, 1992 ; Norse, 2005 ; Simera et al., 2010 ; Bilotta et al., 2015 ; Kerr et al., 2015 ; Olander et al. 2017 ; POST, 2017 ). Specific research methods, metrics and/or models should be used (Aguinis et al. 2010 ), with systematic reviews/evidence synthesis considered particularly useful for policymakers (Lavis et al., 2003 ; Sutherland, 2013 ; Caird et al., 2015 ; Andermann et al., 2016 ; Donnelly et al., 2018 ; Topp et al., 2018 ), and often also randomised controlled trials, properly piloted and evaluated (Walley et al., 2018 ). Truly interdisciplinary research is required to identify new perspectives (Chapman et al., 2015 ; Marshall and Cvitanovic, 2017 ) and explore the “practical significance” of research for policy and practice (Aguinis et al. 2010 ). Academics must communicate scientific uncertainty and the strengths and weaknesses of a piece of research (Norse, 2005 ; Aguinis et al., 2010 ; Tyler, 2013 ; Game et al., 2015 ; Sutherland and Burgman, 2015 ), and be trained to “estimate probabilities of events, quantities or model parameters” (Sutherland and Burgman, 2015 ). Be ‘policy-relevant’ (NCCPE, 2018 ; Maddox, 1996 ; Green et al., 2009 ; Farmer, 2010 ; Kerr et al., 2015 ; Colglazier, 2016 ; Tesar et al., 2016 ; Echt, 2017b ; Fleming and Pyenson, 2017 ; Olander et al., 2017 ; POST, 2017 ) (although this is rarely defined). Two exceptions include the advice for research programmes to be embedded within national and regional governmental programmes (Walley et al., 2018 ) and for researchers to provide policymakers with models estimating the harms and benefits of different policy options (Basbøll, 2018 ) (Topp et al., 2018 ).

Communicate well: make your research relevant and readable

Academics should engage in more effective dissemination, (NCCPE, 2018 ; Maddox, 1996 ; Green et al., 2009 ; Farmer, 2010 ; Kerr et al., 2015 ; Colglazier, 2016 ; Tesar et al., 2016 ; Echt, 2017b ; Fleming and Pyenson, 2017 ; Olander et al. 2017 ; POST, 2017 ), make data public, (Malakoff, 2017 ), and provide clear summaries and syntheses of problems and solutions (Maybin, 2016 ). Use a range of outputs (social media, blogs, policy briefs), to make sure that policy actors can contact you with follow up questions (POST, 2017 ) (Parry-Davies and Newell, 2014 ), and to write for generalist, but not ignorant readers (Hillman, 2016 ). Avoid jargon but don’t over-simplify (Farmer, 2010 ; Goodwin, 2013 ); make simple and definitive statements (Brumley, 2014 ), and communicate complexity (Fischoff, 2015 ; Marshall and Cvitanovic, 2017 ) (Whitty, 2015 ).

Some blogs advise academics to use established storytelling techniques to persuade policymakers of a course of action or better communicate scientific ideas. Produce good stories based on emotional appeals or humour to expand and engage your audience (Evans, 2013 ; Fischoff, 2015 ; Docquier, 2017 ; Petes and Meyer, 2018 ). Jones and Crow develop a point-by-point guide to creating a narrative through scene-setting, casting characters, establishing a plot, and equating the moral with a ‘solution to the policy problem’ (Jones and Crow, 2017 ; Jones and Crow, 2018 ).

Understand policy processes, policymaking context, and key actors

Academics are advised to get to know how policy works, and in particular to accept that the normative technocratic ideal of ‘evidence-based’ policymaking does not reflect the political nature of decision-making (Tyler, 2013 ; Echt, 2017a ). Policy decisions are ultimately taken by politicians on behalf of constituents, and technological proposals are only ever going to be part of a solution (Eisenstein, 2017 ). Some feel that science should hold a privileged position in policy (Gluckman, 2014 ; Reed and Evely, 2016 ) but many recognise that research is unlikely to translate directly into an off-the-shelf ready-to-wear policy proposal (Tyler, 2013 ; Gluckman, 2014 ; Prehn, 2018 ), and that policy rarely changes overnight (Marshall and Cvitanovic, 2017 ). Being pragmatic and managing one’s expectations about the likely impact of research on policy—which bears little resemblance to the ‘policy cycle’—is advised (Sutherland and Burgman, 2015 ; Tyler, 2013 ).

Second, learn the basics, such as the difference between the role of government and parliament, and between other types of policymakers (Tyler, 2013 ). Note that your policy audience is likely to change on a yearly basis if not more frequently (Hillman, 2016 ); that they have busy and constrained lives (Lloyd, 2016 ; Docquier, 2017 ; Prehn, 2018 ) and their own career concerns and pathways (Lloyd, 2016 ; Docquier, 2017 ; Prehn, 2018 ). Do not guess what might work; take the time to listen and learn from policy colleagues (Datta, 2018 ).

Third, learn to recognise broader policymaking dynamics, paying particular attention to changing policy priorities (Fischoff, 2015 ; Cairney, 2017 ). Academics are good at placing their work in the context of the academic literature, but also need to situate it in the “political landscape” (Himmrich, 2016 ). To do so means taking the time to learn what, when, where and who to influence (NCCPE, 2018 ; Marshall and Cvitanovic, 2017 ; Tilley et al., 2017 ) and getting to know audiences (Jones and Crow, 2018 ); learning about, and maximising use of established ways to engage, such as in advisory committees and expert panels (Gluckman, 2014 ; Pain, 2014 ; Malakoff, 2017 ; Hayes and Wilson, 2018 ) (Pain, 2014 ). Persistance and patience is advised—sticking at it, and changing strategy if it is not working (Graffy, 1999 ; Tilley et al., 2017 ).

Be ‘accessible’ to policymakers: engage routinely, flexibly, and humbly

Prehn uses the phrase ‘professional friends’, which encapsulates vague but popular concepts such as ‘build trust’ and ‘develop good relationships’ (Farmer, 2010 ; Kerr et al., 2015 ; Prehn, 2018 ). Building and maintaining long-term relationships takes effort, time and commitment (Goodwin, 2013 ; Maybin, 2016 ), can be easily damaged. It can take time to become established as a “trusted voice” (Goodwin, 2013 ) and may require a commitment to remaining non-partisan (Morgan et al. 2001 ). Therefore, build routine engagement on authentic relationships, developing a genuine rapport by listening and responding (Goodwin, 2013 ; Jo Clift Consulting, 2016 ; Petes and Meyer, 2018 ). Some suggest developing leadership and communication skills, but with reference to listening and learning (Petes and Meyer, 2018 ; Topp et al., 2018 ); Adopting a respectful, helpful, and humble demeanour, recognising that while academics are authorities on the evidence, we may not be the appropriate people to describe or design policy options (Nichols, 1972 ; Knottnerus and Tugwell, 2017 ) (although many disagree (Morgan et al., 2001 ; Morandi, 2009 )). Behave courteously by acting professionally (asking for feedback; responding promptly; following up meetings and conversations swiftly) (NCCPE, 2018 ; Goodwin, 2013 ; Jo Clift Consulting, 2016 ). Several commentators also reference the idea of ‘two cultures’ of policy and research (Shergold, 2011 ), which have their own language, practices and values (Goodwin, 2013 ). Learning to speak this language would enable researchers to better understand all that is said and unsaid in interactions (Jo Clift Consulting, 2016 ).

Decide if you want to be an ‘issue advocate’ or ‘honest broker’

Reflecting on accessibility should prompt researchers to consider how to draw the line between providing information or recommendations. One possibility is for researchers to simply disseminate their research honestly, clearly, and in a timely fashion, acting as an ‘honest broker’ of the evidence base (Pielke, 2007 ). In this mode, other actors may pick up and use evidence to influence policy in a number of ways—shaping the debate, framing issues, problematizing the construction of solutions and issues, explaining the options (Nichols, 1972 ; Knottnerus and Tugwell, 2017 )—while researchers seek to remain ‘neutral’. Another option is to recommend specific policy options or describe the implications for policy based on their research (Morgan et al., 2001 ; Morandi, 2009 ), perhaps by storytelling to indicate a preferred course of action (Evans, 2013 ; Fischoff, 2015 ; Docquier, 2017 ; Petes and Meyer, 2018 ). However, the boundary between these two options is very difficult to negotiate or identify in practice, particularly since policymakers often value candid judgements and opinions from people they trust, rather than new research (Maybin, 2016 ).

Build relationships (and ground rules) with policymakers

Getting to know policymakers better and building longer term networks (Chapman et al., 2015 ; Evans and Cvitanovic, 2018 ) could give researchers better access to opportunities to shape policy agendas (Colglazier, 2016 ; Lucey et al., 2017 ; Tilley et al., 2017 ), give themselves more credibility within the policy arena (Prehn, 2018 ), help researchers to identify the correct policy actors or champions to work with (Echt, 2017a ), and provide better insight into policy problems (Chapman et al., 2015 ; Colglazier, 2016 ; Lucey et al., 2017 ; Tilley et al., 2017 ). Working with policymakers as early as possible in the process helps develop shared interpretations of the policy problem (Echt, 2017b ; Tyler, 2017 ) and agreement on the purpose of research (Shergold, 2011 ). Co-designing, or otherwise doing research-for-policy together is widely held to be morally, ethically, and practically one of the best ways to achieve the elusive goal of getting evidence into policy (Sebba, 2011 ; Green, 2016 ; Eisenstein, 2017 ). Engaging publics more generally is also promoted (Chapman et al., 2015 ). Relationship-building activities require major investment and skills, and often go unrecognised (Prehn, 2018 ), but may offer the most likely route to get evidence into policy (Sebba, 2011 ; Green, 2016 ; Eisenstein, 2017 ). Initially, researchers can use blogs and social media (Brumley, 2014 ; POST, 2017 ) to increase their visibility to the policy community, combined with networking and direct approaches to policy actors (Tyler, 2013 ).

One of the few pieces built on a case study of impact argued that academics should build coalitions of allies, but also engage political opponents, and learn how to fight for their ideas (Coffait, 2017 ). However, collaboration can also lead to conflict and reputational damage (De Kerckhove et al., 2015 ). Therefore, when possible, academics should produce ground rules acceptable to academics and policymakers. They should be honest and thoughtful about how, when, and why to engage; and recognise the labour and resources required for successful engagement (Boaz et al., 2018 ). Successful engagement may require all parties to agree about processes , including ethics, consent, and confidentiality, and outputs , including data, intellectual property (De Kerckhove et al., 2015 ; Game et al., 2015 ; Hutchings and Stenseth, 2016 ). The organic development of these networks and contacts takes time and effort, and should be recognised as assets, particularly when offered new contacts by colleagues (Evans and Cvitanovic, 2018 ; Boaz et al., 2018 )

Be ‘entrepreneurial’ or find someone who is

Much of the ‘how to’ advice projects an image of a daring, persuasive scientist, comfortable in policy environments and always available when needed (Datta, 2018 ), by using mentors to build networks, or through ‘cold calling’ (Evans and Cvitanovic, 2018 ). Some ideas and values need to be fought for if they are to achieve dominance (Coffait, 2017 ; Docquier, 2017 ), and multiple strategies may be required, from leveraging trust in academics to advocating more generally for evidence based policy (Garrett, 2018 ). Academics are advised to develop “media-savvy” skills (Sebba, 2011 ), learn how to “sell the sizzle”(Farmer, 2010 ), become able to “convince people who think differently that shared action is possible,” (Fischoff, 2015 ), but also be pragmatic, by identifying real, tangible impacts and delivering them (Reed and Evely, 2016 ). Such a range of requirements may imply that being constantly available, and becoming part of the scenery, makes it more likely for a researcher to be the person to hand in an hour of need (Goodwin, 2013 ). Or, it could prompt a researcher to recognise their relative inability to be persuasive, and to hire a ‘knowledge broker’ to act on their behalf (Marshall and Cvitanovic, 2017 ; Quarmby, 2018 ).

Reflect continuously: should you engage, do you want to, and is it working?

Academics may be a good fit in the policy arena if they ‘want to be in real world’, ‘enjoy finding solutions to complex problems’ (Echt, 2017a ; Petes and Meyer, 2018 ), or are driven ‘by a passion greater than simply adding another item to your CV’ (Burgess, 2005 ). They should be genuinely motivated to take part in policy engagement, seeing it as a valuable exercise in its own right, as opposed to something instrumental to merely improve the stated impact of research (Goodwin, 2013 ). For example, scientists can “engage more productively in boundary work, which is defined as the ways in which scientists construct, negotiate, and defend the boundary between science and policy” (Rose, 2015 ). They can converse with policymakers about how science and scientific careers are affected by science policy, as a means of promoting more useful support within government (Pain, 2014 ). Or, they can use teaching to get students involved at an early stage in their careers, to train a new generation of impact-ready entrepreneurs (Hayes and Wilson, 2018 ). Such a profound requirement of one’s time should prompt constant reflection and refinement of practice. It is hard to know what our impact may be or how to sustain it (Reed and Evely, 2016 ). Therefore, academics who wish to engage must learn and reflect on the consequences of their actions (Datta, 2018 ; Topp et al., 2018 ).

The wider literature on the wider policymaking context

Our observation of this advice is that it is rather vague, very broad, and each theme contains a diversity of opinions. We also argue that much of this advice is based on misunderstandings about policy processes, and the roles of researchers and policymakers. We summarise these misunderstandings below (see Table 2 for an overview), by drawing a wider range of sources such as policy studies literature (Cairney, 2016 ) and a systematic review of factors influencing evidence use in policy (Oliver et al., 2014 ), to identify the wider context in which to understand and use these tips. We also contextualise these discussions in the broader evidence and policy/practice literature.

Firstly, there is no consensus over what counts as good evidence for policy (Oliver and de Vocht, 2015 ), and therefore how best to communicate good evidence . While we can probably agree what constitutes high quality research within each field, the criteria we use to assess it in many disciplines (such as generalisability and methodological rigour) have far lower salience for policymakers (Hammersley, 2013 ; Locock and Boaz, 2004 ). They do not adhere to the scientific idea of a ‘knowledge deficit’ in which our main collective aim is to reduce policymaker uncertainty by producing more of the best scientific evidence (Crow and Jones, 2018 ). Rather, evidence garners credibility, legitimacy and usefulness through its connections to individuals, networks and topical issues (Cash et al., 2003 ; Boaz et al., 2015 ; Oliver and Faul, 2018 ).

One way in which to understand the practical outcome of this distinction is to consider the profound consequences arising from the ways in which policymakers address their ‘bounded rationality’ (Simon, 1976 ; Cairney and Kwiatkowski, 2017 ). Individuals seek cognitive shortcuts to avoid decision-making ‘paralysis’—when faced with an overwhelming amount of possibly-relevant information—and allow them to process information efficiently enough to make choices (Gigerenzer and Selten, 2001 ). They combine ‘rational’ shortcuts, including trust in expertise and scientific sources, and ‘irrational’ shortcuts, to use their beliefs, emotions, habits, and familiarity with issues to identify policy problems and solutions (see Haidt, 2001 ; Kahneman, 2011 ; Lewis, 2013 ; Baumgartner, 2017 ; Jones and Thomas, 2017 ; Sloman and Fernbach, 2017 ). Therefore, we need to understand how they use such shortcuts to interpret their world, pay attention to issues, define issues as policy problems, and become more or less receptive to proposed solutions. In this scenario, effective policy actors—including advocates of research evidence—frame evidence to address the many ways to interpret policy problems (Cairney, 2016 ; Wellstead et al. 2018 ) and compete to draw attention to one ‘image’ of a problem and one feasible solution at the expense of the competition (Kingdon and Thurber, 1984 ; Majone, 1989 ; Baumgartner and Jones, 1993 ; Zahariadis, 2007 ). This debate determines the demand for evidence.

Secondly, there is little empirical guidance on how to gain the wide range of skills that researchers and policymakers need, to act collectively to address policymaking complexity, including to: produce evidence syntheses, manage expert communities, ‘co-produce’ research and policy with a wide range of stakeholders, and be prepared to offer policy recommendations as well as scientific advice (Topp et al., 2018 ). The list of skills includes the need to understand the policy processes in which you engage, such as by understanding the constituent parts of policymaking environments (John, 2003 , p. 488; (Cairney and Heikkila, 2014 ), p. 364–366) and their implications for the use of evidence:

Many actors make and influence policy in many ‘venues’ across many levels and types of government. Therefore, it is difficult to know where the ‘action’ is.

Each venue has its own ‘institutions’, or rules and norms maintained by many policymaking organisations. These rules can be formal and well understood, or informal, unwritten, and difficult to grasp (Ostrom, 2007a , 2007b ). Therefore, it takes time to learn the rules before being able to use them effectively.

These ‘rules of the game’ extend to policy networks, or the relationships between policymakers and influencers, many of which develop in ‘subsystems’ and contain relatively small groups of specialists. One can be a privileged insider in one venue but excluded from another, and the outcome may relate minimally to evidence.

Networks often reproduce dominant ‘ideas’ regarding the nature of the policy problem, the language we use to describe it, and the political feasibility of potential solutions (Kingdon and Thurber, 1984 ). Therefore, framing can make the difference between being listened to or ignored.

Policy conditions and events can reinforce or destabilise institutions. Evidence presented during crises or ‘focusing events’ (Birkland, 1997 ) can prompt lurches of attention from one issue to another, but this outcome is rare, and policy can remain unchanged for decades.

A one-size fits-all model is unlikely to help researchers navigate this environment where different audiences and institutions have different cultures, preferences and networks. Gaining knowledge of the complex policy context can be extremely challenging, yet the implications are profoundly important. In that context, theory-informed studies recommend investing your time over the long term, to build up alliances, trust in the messenger, knowledge of the system, and exploit ‘windows of opportunity’ for policy change (Cairney, 2016 , p.124). However, they also suggest that this investment of time may pay off only after years or decades—or not at all (Cairney and Oliver, 2018 ).

This context could have a profound impact on the way in which we interpret the eight tips. For example, it may:

tip the balance from scientific to policy-relevant measures of evidence quality;

shift the ways in which we communicate evidence from a focus on clarity to an emphasis on framing;

suggest that we need to engage with policymakers to such an extent that the division between honest broker and issue advocate become blurry;

prompt us to focus less on the ‘entrepreneurial’ skills of individual researchers and more on the nature of their environment; and

inform reflection on our role, since successful engagement may feel more like a career choice than an event.

Throughout this process, we need to decide what policy engagement is for —whether it is to frame problems or simply measure them according to an existing frame—and how far researchers should go to be useful and influential . While immersing oneself fully in policy processes may be the best way to achieve credibility and impact for researchers, there are significant consequences of becoming a political actor (Jasanoff and Polsby, 1991 ; Pielke, 2007 ; Haynes et al., 2011 ; Douglas, 2015 ). The most common consequences include criticism within one’s peer-group (Hutchings and Stenseth, 2016 ), being seen as an academic ‘lightweight’ (Maynard, 2015 ), and being used to add legitimacy to a policy position (Himmrich, 2016 ; Reed and Evely, 2016 ; Crouzat et al., 2018 ). More serious consequences include a loss of status completely—David Nutt famously lost his advisory role after publicly criticising UK government drug policy—and the loss of one’s safety if adopting an activist mindset (Zevallos, 2017 ). If academics need to go ‘all in’ to secure meaningful impact, we need to reflect on the extent to which they have the resources and support to do so.

Three major dilemmas in policy engagement

These misunderstandings matter, because well-meaning people are giving recommendations that are not based on empirical evidence, and may lead to significant risks, such as reputational damage and wasted resources. Further, their audience may reinforce this problem by holding onto deficit models of science and policy, and equating policy impact with a simple linear policy cycle. When unsuccessful, despite taking the ‘how to’ advice to heart, researchers may blame politics and policymakers rather than reflecting on their own role in a process they do not understand fully.

Although it is possible to synthesise the ‘how to’ advice into eight main themes, many categories contain a wide range of beliefs or recommendations within a very broad description of qualities like’ accessibility’ and ‘engagement’. We interrogate key examples to identify the wide range of (potentially contradictory) advice about the actual and desirable role of researchers in politics: whether to engage, how to engage, and the purpose of engagement.

Should academics try to influence policy?

A key area of disagreement was over the normative question of whether academics should advocate for policy positions, try to persuade policymakers of particular courses of action (e.g., Tilley et al., 2017 ), offer policy implications from their research (Goodwin, 2013 ), or be careful not to promote particular methods and policy approaches (Gluckman, 2014 ; Hutchings and Stenseth, 2016 ; Prehn, 2018 ). Aspects of the debate include:

The public duty to engage versus the need to protect science . Several pieces argued that publicly-paid academics should regard policy impact as a professional duty (Shergold, 2011 ; Tyler, 2017 ). If so, they should try: to influence policy by framing evidence into dominant policy narratives or to address issues that policymakers care about (Rose, 2015 ; Hillman, 2016 ; King, 2016 ), and engage in politics directly or when needed (Farmer, 2010 ; Petes and Meyer, 2018 ). Others felt that it risked an academic’s main asset – their independence of advice (Whitty, 2015 ; Alberts et al., 2018 ; Dodsworth and Cheeseman, 2018 )—and that this political role should be left to the specialists, such as scientific advisors (Hutchings and Stenseth, 2016 ). Others emphasise the potential costs to self-censorship (De Kerckhove et al., 2015 ), and the tension between being elite versus inclusive and accessible (Collins, 2011 ).

The potential for conflict and reputational damage . Some identify the tension between being able to provide rational advice to shape political discourse and the potential for conflict (De Kerckhove et al., 2015 ). Others rejected it as a false dichotomy, arguing that advocacy is a “continuous process of establishing relationships and creating a community of experts both in and outside of government who can give informed input on policies” (Himmrich, 2016 ).

The need to represent academics and academia : Some recommend discussing topics beyond your narrow expertise—almost as a representative for your field or profession (Petes and Meyer, 2018 )—while others caution against it, since speaking about one’s own expertise is the best way to maintain credibility (Marshall and Cvitanovic, 2017 ).

Such debates imply a choice to engage and do not routinely consider the unequal effects built on imbalances of power (Cairney and Oliver, 2018 ). Many researchers are required to show impact and it is not strictly a choice to engage. Further, there are significant career costs to engagement, which are relatively difficult to incur by more junior or untenured researchers, while women and people of colour may be more subject to personal abuse or exploitation. The risk of burnout, or the opportunity cost of doing impact rather than conducting the main activities of teaching and research jobs is too high for many (Graffy, 1999 ; Fischoff, 2015 ). Being constantly available, engaging with no clear guarantee of impact or success, with no payment for time or even travel is not possible for many researchers, even if that is the most likely way to achieve impact. This means that the diversity of voices available to policy is limited (Oliver and Faul, 2018 ). Much of the ‘how to’ advice is tailored to individuals without taking into account these systemic issues. They are mostly drawn from the experiences of people who consider themselves successful at influencing policy. The advice is likely to be useful mostly to a relatively similar group of people who are confident, comfortable in policy environments, and have both access and credibility within policy spaces. Thus, the current advice and structures may help reproduce and reinforce existing power dynamics and an underrepresentation of women, BAME, and people who otherwise do not fit the very narrow mould (Cairney and Oliver, 2018 )—even extending to the exclusion of academics from certain institutions or circles (Smith and Stewart, 2017 ).

How should academics influence policy?

A second dilemma is: how should academics try to influence policy? By merely stating the facts well, telling stories to influence our audience more, or working with our audience to help produce policy directly? Three main approaches were identified in the reviews. Firstly, to use specific tools such as evidence syntheses, or social media, to improve engagement (Thomson, 2013 ; Caird et al., 2015 ). This approach fits with the ‘deficit’ model of the evidence-policy relationships, whereby researchers merely provide content for others to work with. As extensively discussed elsewhere, this method, while safe, has not been shown to be effective at achieving policy change; and underpinning much of the advice in this strain are some serious misunderstandings about the practicalities, psychology and real world nature of policy change and information flow (Sturgis and Allum, 2004 ; Fernández, 2016 ; Simis et al., 2016 ).

Secondly, to use emotional appeals and storytelling to craft attractive narratives with the explicit aim of shaping policy options (Jones and Crow, 2017 ; Crow and Jones, 2018 ). Leaving aside the normative question of the independence of scientific research, or researchers’ responsibilities to represent data fully and honestly (Pielke, 2007 ), this strategy makes practical demands on the researcher. It requires having the personal charisma to engage diverse audiences and seem persuasive yet even-handed. Some of the advice suggests that academics try to seem pragmatic and equable about the outcome of any such approach, although not always clear whether this was to help the researcher seem more worldly-wise and sensible, or simply as a self-protective mechanism (King, 2016 ). Either way, deciding how to seem omnipotent yet credible; humble but authoritative; straightforward yet not over-simplifying—all while still appearing authentic—is probably beyond the scope of most of our acting abilities.

Thirdly, to collaborate (Oliver et al., 2014 ). Co-production is widely hailed as the most likely way to promote the use of research evidence in policy, as it would enable researchers to respond to policy agendas, and enable more agile multidisciplinary teams to coalesce around topical policy problems. There are also trade-offs to this way of working (Flinders et al., 2016 ). Researchers have to cede control over the research agenda and interpretations. This can give rise to accusations of bias, partisanship, or at least partiality for one political view over another. There are significant reputational risks involved in collaboration, within the academic community and outside it. Pragmatically, there are practical and logistical concerns about how and when to maintain control of intellectual property and access to data. More broadly, it may cloud one’s judgement about the research in hand, hindering one’s ability to think or speak critically without damaging working relationships.

What is the purpose of academics engagement in policymaking?

Authors do not always tell us the purpose of engagement before they tell us how to do it. Some warn against ‘tokenistic’ engagement, and there is plenty of advice for academics wanting to build ‘genuine’ rapport with policymakers to make their research more useful. Yet, it is not always clear if researchers should try and seem authentically interested in policymakers as a means of achieving impact or actually to listen, learn, and cede some control over the research process. The former can be damaging to the profession. As Goodwin points out, it’s not just policymakers who may feel short-changed by transactional relationships: “by treating policy engagement as an inconvenient and time-consuming ‘bolt on' you may close doors that could be left open for academics who genuinely care about this collaborative process” (Goodwin, 2013 ). The latter option is more radical. It involves a fundamentally different way of doing public engagement: one with no clear aim in mind other than to listen and learn, with the potential to transform research practices and outputs (Parry-Davies and Newell, 2014 ).

Although the literature helps us frame such dilemmas, it does not choose for us how to solve them. There are no clear answers on how scientists should act in relation to policymaking or the public (Mazanderani and Latour, 2018 ), but we can at least identify and clarify the dilemmas we face, and seek ways to navigate them. Therefore, it is imperative to move quickly from basic ‘how to’ advice towards a deeper understanding of the profound choices that shape careers and lives.

Conclusions

Academics are routinely urged to create impact from their research; to change policy, practice, and even population outcomes. There are, however, few empirical evaluations of strategies to enable academics to create impact. This lack of empirical evidence has not prevented people from offering advice based on their personal experience, rather than concrete evaluations of strategies to increase impact. Much of the advice demonstrates a limited understanding or description of policy processes and the wider social aspects of ‘doing’ science and research. The interactions between knowledge production and use may be so complex that abstract ‘how to’ advice is limited in use. The ‘how to’ advice has a potentially immense range, from very practical issues (how long should an executive summary be?) to very profound (should I risk my safety to secure policy change?), but few authors situate themselves in that wider context in which they provide advice.

There are some more thoughtful approaches which recognise more complex aspects of the task of influencing policy: the emotional, practical and cognitive labour of engaging; that it often goes unrewarded by employers; that impact is never certain, so engagement may remain unrewarded; and, that our current advice, structures and incentives have important implications for how we think about the roles and responsibilities of scientists when engaging with publics. Some of the ‘how to’ literature also considers the wider context of research production and use, noting that the risks and responsibilities are borne by individuals and, for example, one individual cannot possibly to get to know the whole policy machinery or predict the consequences of their engagement on policy or themselves. For example, universities, funders and academics are advised to develop incentives, structures to make ‘impact’ happen more easily (Kerr et al., 2015 ; Colglazier, 2016 ); and remove any actual or perceived penalisation of ‘doing’ public engagement (Maynard, 2015 ). Some suggest universities should move into the knowledge brokerage space, acting more like think-tanks (Shergold, 2011 ) by creating and championing policy-relevant evidence (Tyler, 2017 ), and providing “embedded gateways” which offer access to credible and high-quality research (Green, 2016 ). Similarly, governments have their own science advisory system which, they are advised, should be both independent, and inclusive and accountable (Morgan et al., 2001 ; Malakoff, 2017 ). Government and Parliament need to be mindful about the diversity of the experts and voices on which they draw. For example, historians and ethicists could help policymakers question their assumptions and explore historical patterns of policies and policy narratives in particular areas (Evans, 2013 ; Haddon et al., 2015 ) but economics and law have more currency with policymakers (Tyler, 2013 ).

However, we were often struck by the limited range of advice offered to academics, many of whom are at the beginning of their careers. This gap may leave each generation of scientists to fight the same battles, and learn the same lessons over again. In the absence of evidence about the effectiveness of these approaches, all one can do is suggest a cautious, learning approach to coproduction and engagement, while recognising that there is unlikely to be a one-size-fits all model which would lead to simple, actionable advice. Further, we do not detect a coherent vision for wider academy-policymaker relations. Since the impact agenda (in the UK, at least) is unlikely to recede any time soon, our best response as a profession is to interrogate it, shape and frame it, and to help us all to find ways to navigate the complex practical, political, moral and ethical challenges associated with being researchers today. The ‘how to’ literature can help, but only if authors are cognisant of their wider role in society and complex policymaking systems.

For some commentators, engagement is a safe choice tacked onto academic work. Yet, for many others, it is a more profound choice to engage for policy change while accepting that the punishments (such as personal threats or abuse) versus rewards (such as impact and career development opportunities) are shared highly unevenly across socioeconomic groups. Policy engagement is a career choice in which we seek opportunities for impact that may never arise, not an event in which an intense period of engagement produces results proportionate to effort.

Overall, we argue that the existing advice offered to academics on how to create impact is not based on empirical evidence, or on good understandings of key literatures on policymaking or evidence use. This leads to significant misunderstandings, and advice which can have potentially costly repercussions for research, researchers and policy. These limitations matter, as they lead to advice which fails to address core dilemmas for academics—whether to engage, how to engage, and why—which have profound implications for how scientists and universities should respond to the call for increased impact. Most of these tips focus on the individuals, whereas engagement between research and policy is driven by systemic factors.

Data availability

The datasets generated during and/or analysed during the current study are not publicly available but are available from the corresponding author on reasonable request.

Change history

17 march 2020.

An amendment to this paper has been published and can be accessed via a link at the top of the paper.

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Oliver, K., Cairney, P. The dos and don’ts of influencing policy: a systematic review of advice to academics. Palgrave Commun 5 , 21 (2019). https://doi.org/10.1057/s41599-019-0232-y

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With the growing intensity of web support and network use in organizations of any specialization, including governmental institutions, educational establishments, and companies in the commercial sector, the need to ensure the integrity, confidentiality, and security of computer resources’ use obviously grows nowadays. To protect the resources of various organizations and their clients, Acceptable Use Policies (AUP) are adopted to prevent possible legal action connected with the violation of network or web resource use regulations. AUPs are specifically designed to ensure the availability, confidentiality, and integrity of computer and network resources’ use within a certain organization, to mitigate the risk exposure, and to minimize the liability of users.

The sample of AUP considered in the present work is the one of the InfoSec AUP published by SANS Institute (2006). The purpose of InfoSec AUP is to “outline the acceptable use of computer equipment”, and protect its employees (SANS Institute, 2006, p. 1). The present purpose is explained by the need to clarify that the inappropriate use of the company’s resources exposes the company’s assets to the risk of experiencing virus and other malware attacks, in line with compromising the network systems and services, and even facing some legal issues with other users and entities the privacy and confidentiality rights of which can be violated through the irresponsible use of SANS Institute’s resources (SANS Institute, 2006).

The InfoSec AUP sets out the principles of confidentiality and integrity to increase awareness of the employees and resources’ users regarding the boundaries to which the protection of privacy extends. Hence, the AUP informs the users that any data created and stored on corporate systems remains the property of SANS Institute, and the users cannot expect any protection of confidentiality thereof when the corporate interests are concerned. Hence, it is the prime responsibility of users to make proper decisions regarding the “reasonableness of personal use” (SANS Institute, 2006, p. 1). InfoSec AUP explicitly sets the statuses of confidential and non-confidential information, making the essential emphasis on the “company private, corporate strategies, competitor sensitive, trade secrets, specifications, customer lists, and research data” (p. 2). Employees are strongly recommended to keep passwords secure, not to share their accounts. Information in resources is encrypted (SANS Institute, 2006).

Critiquing the InfoSec AUP, one has to note that it has two major gaps – delineating the authority of some individuals or departments regarding the investigation of AUP violation, and stipulating the ways in which the organization can use personal information stored on the SANS Institute’s resources. The items that do not violate the AUP, but can still be used within the company are an ambiguous point in the AUP, since employees may have some personal photos or personal e-mail protected from the third parties, while the intra-company staff may have full access to them. Hence, these points have to be clarified to increase the integrity of resource use within the company as strongly as it protects the company’s resources from external intrusion.

To ensure compliance with the InfoSec AUP, the company reserves the right to conduct unplanned audits of corporate networks and systems. Moreover, some authorized individuals in the SANS Institute can monitor equipment, systems, and network traffic with this purpose. The recommendation on improving compliance with the AUP may be given on setting out the process of investigating complaints about potential violations. The example of the Caltech Alumni Association (2013) can be taken by InfoSec – the AUP of this organization delineates the process of investigating AUP compliance. If the organization or its designated agent receives a complaint about the irresponsible use of the organization’s resources, an investigation is held to ensure compliance with the AUP, city, state, or federal laws and regulations. During the investigation, the suspected user’s access to resources is officially suspended (Caltech Alumni Association, 2013).

To increase awareness of AUP, the InfoSec AUP explicitly sets the responsibility for violation of confidentiality policy on employees, stating that authorized users are responsible for the security of their passwords and accounts. The use of PCs, workstations, and laptops is also regulated by the AUP, and is the responsibility of users who have to log off the unattended hosts (SANS Institute, 2006). Since all hosts are considered the property of SANS Institute, users are strongly recommended to be highly cautious when opening e-mails with attachments to protect the company’s resources from various types of spyware and malware. The users violating the AUP are subject to disciplinary action including the termination of employment (SANS Institute, 2006).

Building awareness of the AUP within a company, as well as ensuring awareness of other organizational policies, is among vital objectives that every company should pursue, since in case there is no planned effort on awareness-building, some unnecessary litigation cam emerge because of the negligence or simple ignorance of AUP conditions. The example of the Montgomery College (2008) memorandum may be taken by InfoSec and many other organizations; before implementing and enforcing the AUP, the college published a memorandum on building AUP including the rationale for its adoption, the purpose and rationale of the AUP. The memorandum also contained the indication of where the AUP could be studied, and clarified the ways in which the AUP would affect the rules of the college resources’ use (Montgomery College, 2008). Hence, as one can see, designing an AUP is not the most essential step in the enforcement of network and web resource confidentiality and fair use; the key objectives of the organizations are to design strong mechanisms for ensuring compliance with AUP, and to build awareness of basic AUP regulations to avoid legal action and suspensions.

Caltech Alumni Association (2013). Acceptable Use Policy. California Institute of Technology. Retrieved from https://www.alumni.caltech.edu/acceptable_use

Montgomery College (2008). Building Awareness of the Acceptable Use Policy. Inside MC Online . Retrieved from http://insidemc.montgomerycollege.edu/details.php?id=3028

SANS Institute (2006). InfoSec Acceptable Use Policy . Retrieved http://www.sans.org/security-resources/policies/Acceptable_Use_Policy.pdf

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Writing an Acceptable Use Policy for Business

An Acceptable Use Policy, or an AUP, is a type of regulation that employees must follow within their company’s internet use. Acceptable use policies specify practices and responsibilities that the user of the network must follow and agree to when using the web. If a worker violates these policies, they can face revocation of access to certain data or the internet.

Acceptable Use Policy Example Rules

Every business and educational facility user must adhere to the code of conduct laid out in their respective company’s acceptable use policy. Strict cybersecurity documentation and guidelines exist to protect businesses against data breaches and malware threats. Some common examples of rules included when writing an acceptable use policy are listed below:

• Company internet guidelines specify business use only 
• E-mail spamming breaches the code of conduct
• Mail bombing to block the server violates the regulations
• Network use for illegal file downloading infringes on acceptable use policy
• Users must report any suspicious activity, such as compromised credentials or unauthorized access to company data.

Why are Acceptable Use Policies Important?

Simply put, if your business uses internet access, you will need an acceptable use policy to increase your company’s network protection.

Acceptable use policies are essential guidelines for your business that protect against data breaches and lawsuits. These policies shield your business from legal action—caused by, for instance, an employee’s negligent internet actions.

Employees’ internet activity, such as visiting illegal sites, can introduce malware and expose the company’s network. Moreover, accidental copying of data into a storage cloud can lead to leaked private organization data. As a result, these infringements can make the company prone to lawsuits. Businesses affected by this negligence can pursue legal action for the violation of acceptable use policy regulations. The threat of legal action on its own could also further discourage employees from violating acceptable use policy regulations.

Other user actions that could violate specified guidelines include acts such as illicit video streaming from a legal site. Although seemingly harmless because it is a legitimate site, it nevertheless violates the code of conduct. If this were allowed to go unpunished, it would set a bad precedent, causing others to believe that they can recklessly use the company’s networks for anything without punishment.

What is the Purpose of an Acceptable Use Policy?

Acceptable use policies are a fundamental part of information security and a document that can render proof of “due diligence.” These regulations provide safety for the network and protect sensitive customer data in the event of regulatory breach audits. The regulations can also protect a company’s brand from reputation damage caused by a data breach. 

The actions of consumers, vendors, contractors, and employees could pose a risk to your organization. The main purpose of AUP regulations is to safeguard your business from potential damage by anyone with access to your systems.

Acceptable use policies cover both intentional and unintentional actions on the part of users. Most importantly, it is critical for users to know that the policies monitor their activity, so they can be held responsible for their actions. As previously mentioned, this awareness alone may deter its users from proceeding with illegal internet activities and encourage them to respect the AUP’s code of conduct. In addition, the intended clientele must understand the instructions for the guidelines. This helps to ensure that they know what they can and cannot do with an organization’s network so that they do not mistakenly cause problems.

Because the policies apply to everyone in the organization—with no exceptions—this applies to upper management position leaders as well. Any member of a company—regardless of position or responsibilities—could potentially cause severe problems for the company if they are careless when using the internet.

In addition, users with legal access can help to report suspicious activities beforehand. Doing so can help to prevent problems such as data breaches before they happen and end them before they become worse for the organization.

What are Acceptable Use Policies for Workplace Technology?

Businesses benefit from having acceptable technology use policies in addition to a standard acceptable use policy. These policies can protect a company or institution from expected future problems. The term acceptable use policies for workplace technology refers to an AUP that covers and regulates the use of technology beyond a company’s computers and network. Acceptable technology use policies are most often used by educational institutions such as schools.

An AUP can protect your organization from threats that could come from, for example, a terminated employee attempting to retaliate.

When putting these regulations in place, there has to be a balance. Extreme limitations prohibiting access to the internet for a mental break, such as checking personal email, can affect companies’ employee retention and morale. Therefore, businesses should make some allowances for workers to more freely use the internet. This could be integrated into a company’s acceptable use policy by including a list of what sorts of internet functions, actions, and websites employees are allowed to use the company’s computers and technology for.

What is Strictly Prohibited as per the Acceptable Use Policy?

AUP access is strictly for lawful purposes. The user is liable for any data received, sent, and stored. Most importantly, the material is subject to regulations.

Strict prohibitions that are illegal if violated include, for example:

• Transmission of protected trademark and copyright data
• Patenting property rights without permission
• Transmission of confidential material posing a threat
• Unauthorized access to systems to monitor network data
• Posting material for libel, defamation, and threats 
• Breach of any security or measures used by the system

Acceptable use policy prohibitions highlight not attempting to infringe on the security of any system and network. Posting commercial messages and e-mail spamming is an explicit violation of the policies.

What to Know to Write Acceptable Use Policies

With the importance and usefulness of acceptable use policies established, there are some important guidelines, elements, and hints you should take into consideration when writing an AUP yourself.

5 Guidelines to Follow When Writing Acceptable Use Policies

• Create real-life scenarios regarding the kinds of technology the acceptable use policy covers
• Clarify with employees the reason for the AUP and why it is important to comply with it
• Explain the consequences of a violation of the AUP’s code of conduct
• Use general and clear vocabulary that is easy for anyone to understand when writing these guidelines 
• Update your acceptable use policies regularly to ensure no compliance with use of the latest technology

Some organizations may reference acceptable technology use policies for the workplace. However, other businesses might not do so. Instead, they might rely on other documentation and regulations to ensure that their technology is used the way they intend it to be.

What are the 6 Key Elements of an AUP?

Often, the administrator of a network implements acceptable use policy regulations. It is the user’s responsibility to follow the guidelines as the administrator sets them. For the most part, the specific elements and regulations can vary between different AUPs. However, there are some elements that most, if not all, acceptable use policies should include.

The National Education Association suggests 6 key elements to the AUP code of conduct.

The Six Acceptable Use Policy Key Elements Are…

• The Preamble is a key element that describes AUP goals covered and not covered in the computer systems. For example, in an educational institution, it describes the conditions under which students can use the network, and the regulations they must follow while doing so. The preamble designates the proper use of computer services by its users.
• The Definition Section clarifies the policies in simple words. This confirms that the users of the network can understand the language and terminology used by the Acceptable Use Policies.
• The Policy Statement explains the computer services protected by the Acceptable Use Policy. This key element summarizes the guidelines under which users have access to the network. For instance, in educational institutions, students will have access to the network according to the task they are to perform on the computer. In many cases, it will be for a class project or homework.  
• An Acceptable Uses Section defines the code of conduct to be followed when using the computer network according to the AUP. An example of this is found in learning centers. In this example, the acceptable uses section will limit students to accessing the computer network for educational purposes only. Similarly to employees, they will have limited access to the workstation network for work-related tasks.
• An Unacceptable Uses Section specifies what is acceptable and unacceptable under the Acceptable Use Policy. The unacceptable uses section element defines the code of conduct. In addition, it helps monitor what users send and receive through the network.

Summing Up Acceptable Use Policies

An Acceptable Use Policy is essential for all educational institutions and businesses. Users in these facilities can expose the network to cyber threats when they are on the internet, potentially without even intending to. Therefore, an acceptable use policy provides a degree of safety and deterrence against cyber breaches by making sure users know what they can and cannot use the network for. However, users must agree to and sign the agreements. This is similar to when you sign onto the internet in your home, where you must agree to a set of guidelines.

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Cultural Relativity and Acceptance of Embryonic Stem Cell Research

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Main Article Content

There is a debate about the ethical implications of using human embryos in stem cell research, which can be influenced by cultural, moral, and social values. This paper argues for an adaptable framework to accommodate diverse cultural and religious perspectives. By using an adaptive ethics model, research protections can reflect various populations and foster growth in stem cell research possibilities.

INTRODUCTION

Stem cell research combines biology, medicine, and technology, promising to alter health care and the understanding of human development. Yet, ethical contention exists because of individuals’ perceptions of using human embryos based on their various cultural, moral, and social values. While these disagreements concerning policy, use, and general acceptance have prompted the development of an international ethics policy, such a uniform approach can overlook the nuanced ethical landscapes between cultures. With diverse viewpoints in public health, a single global policy, especially one reflecting Western ethics or the ethics prevalent in high-income countries, is impractical. This paper argues for a culturally sensitive, adaptable framework for the use of embryonic stem cells. Stem cell policy should accommodate varying ethical viewpoints and promote an effective global dialogue. With an extension of an ethics model that can adapt to various cultures, we recommend localized guidelines that reflect the moral views of the people those guidelines serve.

Stem cells, characterized by their unique ability to differentiate into various cell types, enable the repair or replacement of damaged tissues. Two primary types of stem cells are somatic stem cells (adult stem cells) and embryonic stem cells. Adult stem cells exist in developed tissues and maintain the body’s repair processes. [1] Embryonic stem cells (ESC) are remarkably pluripotent or versatile, making them valuable in research. [2] However, the use of ESCs has sparked ethics debates. Considering the potential of embryonic stem cells, research guidelines are essential. The International Society for Stem Cell Research (ISSCR) provides international stem cell research guidelines. They call for “public conversations touching on the scientific significance as well as the societal and ethical issues raised by ESC research.” [3] The ISSCR also publishes updates about culturing human embryos 14 days post fertilization, suggesting local policies and regulations should continue to evolve as ESC research develops. [4]  Like the ISSCR, which calls for local law and policy to adapt to developing stem cell research given cultural acceptance, this paper highlights the importance of local social factors such as religion and culture.

I.     Global Cultural Perspective of Embryonic Stem Cells

Views on ESCs vary throughout the world. Some countries readily embrace stem cell research and therapies, while others have stricter regulations due to ethical concerns surrounding embryonic stem cells and when an embryo becomes entitled to moral consideration. The philosophical issue of when the “someone” begins to be a human after fertilization, in the morally relevant sense, [5] impacts when an embryo becomes not just worthy of protection but morally entitled to it. The process of creating embryonic stem cell lines involves the destruction of the embryos for research. [6] Consequently, global engagement in ESC research depends on social-cultural acceptability.

a.     US and Rights-Based Cultures

In the United States, attitudes toward stem cell therapies are diverse. The ethics and social approaches, which value individualism, [7] trigger debates regarding the destruction of human embryos, creating a complex regulatory environment. For example, the 1996 Dickey-Wicker Amendment prohibited federal funding for the creation of embryos for research and the destruction of embryos for “more than allowed for research on fetuses in utero.” [8] Following suit, in 2001, the Bush Administration heavily restricted stem cell lines for research. However, the Stem Cell Research Enhancement Act of 2005 was proposed to help develop ESC research but was ultimately vetoed. [9] Under the Obama administration, in 2009, an executive order lifted restrictions allowing for more development in this field. [10] The flux of research capacity and funding parallels the different cultural perceptions of human dignity of the embryo and how it is socially presented within the country’s research culture. [11]

b.     Ubuntu and Collective Cultures

African bioethics differs from Western individualism because of the different traditions and values. African traditions, as described by individuals from South Africa and supported by some studies in other African countries, including Ghana and Kenya, follow the African moral philosophies of Ubuntu or Botho and Ukama , which “advocates for a form of wholeness that comes through one’s relationship and connectedness with other people in the society,” [12] making autonomy a socially collective concept. In this context, for the community to act autonomously, individuals would come together to decide what is best for the collective. Thus, stem cell research would require examining the value of the research to society as a whole and the use of the embryos as a collective societal resource. If society views the source as part of the collective whole, and opposes using stem cells, compromising the cultural values to pursue research may cause social detachment and stunt research growth. [13] Based on local culture and moral philosophy, the permissibility of stem cell research depends on how embryo, stem cell, and cell line therapies relate to the community as a whole. Ubuntu is the expression of humanness, with the person’s identity drawn from the “’I am because we are’” value. [14] The decision in a collectivistic culture becomes one born of cultural context, and individual decisions give deference to others in the society.

Consent differs in cultures where thought and moral philosophy are based on a collective paradigm. So, applying Western bioethical concepts is unrealistic. For one, Africa is a diverse continent with many countries with different belief systems, access to health care, and reliance on traditional or Western medicines. Where traditional medicine is the primary treatment, the “’restrictive focus on biomedically-related bioethics’” [is] problematic in African contexts because it neglects bioethical issues raised by traditional systems.” [15] No single approach applies in all areas or contexts. Rather than evaluating the permissibility of ESC research according to Western concepts such as the four principles approach, different ethics approaches should prevail.

Another consideration is the socio-economic standing of countries. In parts of South Africa, researchers have not focused heavily on contributing to the stem cell discourse, either because it is not considered health care or a health science priority or because resources are unavailable. [16] Each country’s priorities differ given different social, political, and economic factors. In South Africa, for instance, areas such as maternal mortality, non-communicable diseases, telemedicine, and the strength of health systems need improvement and require more focus [17] Stem cell research could benefit the population, but it also could divert resources from basic medical care. Researchers in South Africa adhere to the National Health Act and Medicines Control Act in South Africa and international guidelines; however, the Act is not strictly enforced, and there is no clear legislation for research conduct or ethical guidelines. [18]

Some parts of Africa condemn stem cell research. For example, 98.2 percent of the Tunisian population is Muslim. [19] Tunisia does not permit stem cell research because of moral conflict with a Fatwa. Religion heavily saturates the regulation and direction of research. [20] Stem cell use became permissible for reproductive purposes only recently, with tight restrictions preventing cells from being used in any research other than procedures concerning ART/IVF.  Their use is conditioned on consent, and available only to married couples. [21] The community's receptiveness to stem cell research depends on including communitarian African ethics.

c.     Asia

Some Asian countries also have a collective model of ethics and decision making. [22] In China, the ethics model promotes a sincere respect for life or human dignity, [23] based on protective medicine. This model, influenced by Traditional Chinese Medicine (TCM), [24] recognizes Qi as the vital energy delivered via the meridians of the body; it connects illness to body systems, the body’s entire constitution, and the universe for a holistic bond of nature, health, and quality of life. [25] Following a protective ethics model, and traditional customs of wholeness, investment in stem cell research is heavily desired for its applications in regenerative therapies, disease modeling, and protective medicines. In a survey of medical students and healthcare practitioners, 30.8 percent considered stem cell research morally unacceptable while 63.5 percent accepted medical research using human embryonic stem cells. Of these individuals, 89.9 percent supported increased funding for stem cell research. [26] The scientific community might not reflect the overall population. From 1997 to 2019, China spent a total of $576 million (USD) on stem cell research at 8,050 stem cell programs, increased published presence from 0.6 percent to 14.01 percent of total global stem cell publications as of 2014, and made significant strides in cell-based therapies for various medical conditions. [27] However, while China has made substantial investments in stem cell research and achieved notable progress in clinical applications, concerns linger regarding ethical oversight and transparency. [28] For example, the China Biosecurity Law, promoted by the National Health Commission and China Hospital Association, attempted to mitigate risks by introducing an institutional review board (IRB) in the regulatory bodies. 5800 IRBs registered with the Chinese Clinical Trial Registry since 2021. [29] However, issues still need to be addressed in implementing effective IRB review and approval procedures.

The substantial government funding and focus on scientific advancement have sometimes overshadowed considerations of regional cultures, ethnic minorities, and individual perspectives, particularly evident during the one-child policy era. As government policy adapts to promote public stability, such as the change from the one-child to the two-child policy, [30] research ethics should also adapt to ensure respect for the values of its represented peoples.

Japan is also relatively supportive of stem cell research and therapies. Japan has a more transparent regulatory framework, allowing for faster approval of regenerative medicine products, which has led to several advanced clinical trials and therapies. [31] South Korea is also actively engaged in stem cell research and has a history of breakthroughs in cloning and embryonic stem cells. [32] However, the field is controversial, and there are issues of scientific integrity. For example, the Korean FDA fast-tracked products for approval, [33] and in another instance, the oocyte source was unclear and possibly violated ethical standards. [34] Trust is important in research, as it builds collaborative foundations between colleagues, trial participant comfort, open-mindedness for complicated and sensitive discussions, and supports regulatory procedures for stakeholders. There is a need to respect the culture’s interest, engagement, and for research and clinical trials to be transparent and have ethical oversight to promote global research discourse and trust.

d.     Middle East

Countries in the Middle East have varying degrees of acceptance of or restrictions to policies related to using embryonic stem cells due to cultural and religious influences. Saudi Arabia has made significant contributions to stem cell research, and conducts research based on international guidelines for ethical conduct and under strict adherence to guidelines in accordance with Islamic principles. Specifically, the Saudi government and people require ESC research to adhere to Sharia law. In addition to umbilical and placental stem cells, [35] Saudi Arabia permits the use of embryonic stem cells as long as they come from miscarriages, therapeutic abortions permissible by Sharia law, or are left over from in vitro fertilization and donated to research. [36] Laws and ethical guidelines for stem cell research allow the development of research institutions such as the King Abdullah International Medical Research Center, which has a cord blood bank and a stem cell registry with nearly 10,000 donors. [37] Such volume and acceptance are due to the ethical ‘permissibility’ of the donor sources, which do not conflict with religious pillars. However, some researchers err on the side of caution, choosing not to use embryos or fetal tissue as they feel it is unethical to do so. [38]

Jordan has a positive research ethics culture. [39] However, there is a significant issue of lack of trust in researchers, with 45.23 percent (38.66 percent agreeing and 6.57 percent strongly agreeing) of Jordanians holding a low level of trust in researchers, compared to 81.34 percent of Jordanians agreeing that they feel safe to participate in a research trial. [40] Safety testifies to the feeling of confidence that adequate measures are in place to protect participants from harm, whereas trust in researchers could represent the confidence in researchers to act in the participants’ best interests, adhere to ethical guidelines, provide accurate information, and respect participants’ rights and dignity. One method to improve trust would be to address communication issues relevant to ESC. Legislation surrounding stem cell research has adopted specific language, especially concerning clarification “between ‘stem cells’ and ‘embryonic stem cells’” in translation. [41] Furthermore, legislation “mandates the creation of a national committee… laying out specific regulations for stem-cell banking in accordance with international standards.” [42] This broad regulation opens the door for future global engagement and maintains transparency. However, these regulations may also constrain the influence of research direction, pace, and accessibility of research outcomes.

e.     Europe

In the European Union (EU), ethics is also principle-based, but the principles of autonomy, dignity, integrity, and vulnerability are interconnected. [43] As such, the opportunity for cohesion and concessions between individuals’ thoughts and ideals allows for a more adaptable ethics model due to the flexible principles that relate to the human experience The EU has put forth a framework in its Convention for the Protection of Human Rights and Dignity of the Human Being allowing member states to take different approaches. Each European state applies these principles to its specific conventions, leading to or reflecting different acceptance levels of stem cell research. [44]

For example, in Germany, Lebenzusammenhang , or the coherence of life, references integrity in the unity of human culture. Namely, the personal sphere “should not be subject to external intervention.” [45]  Stem cell interventions could affect this concept of bodily completeness, leading to heavy restrictions. Under the Grundgesetz, human dignity and the right to life with physical integrity are paramount. [46] The Embryo Protection Act of 1991 made producing cell lines illegal. Cell lines can be imported if approved by the Central Ethics Commission for Stem Cell Research only if they were derived before May 2007. [47] Stem cell research respects the integrity of life for the embryo with heavy specifications and intense oversight. This is vastly different in Finland, where the regulatory bodies find research more permissible in IVF excess, but only up to 14 days after fertilization. [48] Spain’s approach differs still, with a comprehensive regulatory framework. [49] Thus, research regulation can be culture-specific due to variations in applied principles. Diverse cultures call for various approaches to ethical permissibility. [50] Only an adaptive-deliberative model can address the cultural constructions of self and achieve positive, culturally sensitive stem cell research practices. [51]

II.     Religious Perspectives on ESC

Embryonic stem cell sources are the main consideration within religious contexts. While individuals may not regard their own religious texts as authoritative or factual, religion can shape their foundations or perspectives.

The Qur'an states:

“And indeed We created man from a quintessence of clay. Then We placed within him a small quantity of nutfa (sperm to fertilize) in a safe place. Then We have fashioned the nutfa into an ‘alaqa (clinging clot or cell cluster), then We developed the ‘alaqa into mudgha (a lump of flesh), and We made mudgha into bones, and clothed the bones with flesh, then We brought it into being as a new creation. So Blessed is Allah, the Best of Creators.” [52]

Many scholars of Islam estimate the time of soul installment, marked by the angel breathing in the soul to bring the individual into creation, as 120 days from conception. [53] Personhood begins at this point, and the value of life would prohibit research or experimentation that could harm the individual. If the fetus is more than 120 days old, the time ensoulment is interpreted to occur according to Islamic law, abortion is no longer permissible. [54] There are a few opposing opinions about early embryos in Islamic traditions. According to some Islamic theologians, there is no ensoulment of the early embryo, which is the source of stem cells for ESC research. [55]

In Buddhism, the stance on stem cell research is not settled. The main tenets, the prohibition against harming or destroying others (ahimsa) and the pursuit of knowledge (prajña) and compassion (karuna), leave Buddhist scholars and communities divided. [56] Some scholars argue stem cell research is in accordance with the Buddhist tenet of seeking knowledge and ending human suffering. Others feel it violates the principle of not harming others. Finding the balance between these two points relies on the karmic burden of Buddhist morality. In trying to prevent ahimsa towards the embryo, Buddhist scholars suggest that to comply with Buddhist tenets, research cannot be done as the embryo has personhood at the moment of conception and would reincarnate immediately, harming the individual's ability to build their karmic burden. [57] On the other hand, the Bodhisattvas, those considered to be on the path to enlightenment or Nirvana, have given organs and flesh to others to help alleviate grieving and to benefit all. [58] Acceptance varies on applied beliefs and interpretations.

Catholicism does not support embryonic stem cell research, as it entails creation or destruction of human embryos. This destruction conflicts with the belief in the sanctity of life. For example, in the Old Testament, Genesis describes humanity as being created in God’s image and multiplying on the Earth, referencing the sacred rights to human conception and the purpose of development and life. In the Ten Commandments, the tenet that one should not kill has numerous interpretations where killing could mean murder or shedding of the sanctity of life, demonstrating the high value of human personhood. In other books, the theological conception of when life begins is interpreted as in utero, [59] highlighting the inviolability of life and its formation in vivo to make a religious point for accepting such research as relatively limited, if at all. [60] The Vatican has released ethical directives to help apply a theological basis to modern-day conflicts. The Magisterium of the Church states that “unless there is a moral certainty of not causing harm,” experimentation on fetuses, fertilized cells, stem cells, or embryos constitutes a crime. [61] Such procedures would not respect the human person who exists at these stages, according to Catholicism. Damages to the embryo are considered gravely immoral and illicit. [62] Although the Catholic Church officially opposes abortion, surveys demonstrate that many Catholic people hold pro-choice views, whether due to the context of conception, stage of pregnancy, threat to the mother’s life, or for other reasons, demonstrating that practicing members can also accept some but not all tenets. [63]

Some major Jewish denominations, such as the Reform, Conservative, and Reconstructionist movements, are open to supporting ESC use or research as long as it is for saving a life. [64] Within Judaism, the Talmud, or study, gives personhood to the child at birth and emphasizes that life does not begin at conception: [65]

“If she is found pregnant, until the fortieth day it is mere fluid,” [66]

Whereas most religions prioritize the status of human embryos, the Halakah (Jewish religious law) states that to save one life, most other religious laws can be ignored because it is in pursuit of preservation. [67] Stem cell research is accepted due to application of these religious laws.

We recognize that all religions contain subsets and sects. The variety of environmental and cultural differences within religious groups requires further analysis to respect the flexibility of religious thoughts and practices. We make no presumptions that all cultures require notions of autonomy or morality as under the common morality theory , which asserts a set of universal moral norms that all individuals share provides moral reasoning and guides ethical decisions. [68] We only wish to show that the interaction with morality varies between cultures and countries.

III.     A Flexible Ethical Approach

The plurality of different moral approaches described above demonstrates that there can be no universally acceptable uniform law for ESC on a global scale. Instead of developing one standard, flexible ethical applications must be continued. We recommend local guidelines that incorporate important cultural and ethical priorities.

While the Declaration of Helsinki is more relevant to people in clinical trials receiving ESC products, in keeping with the tradition of protections for research subjects, consent of the donor is an ethical requirement for ESC donation in many jurisdictions including the US, Canada, and Europe. [69] The Declaration of Helsinki provides a reference point for regulatory standards and could potentially be used as a universal baseline for obtaining consent prior to gamete or embryo donation.

For instance, in Columbia University’s egg donor program for stem cell research, donors followed standard screening protocols and “underwent counseling sessions that included information as to the purpose of oocyte donation for research, what the oocytes would be used for, the risks and benefits of donation, and process of oocyte stimulation” to ensure transparency for consent. [70] The program helped advance stem cell research and provided clear and safe research methods with paid participants. Though paid participation or covering costs of incidental expenses may not be socially acceptable in every culture or context, [71] and creating embryos for ESC research is illegal in many jurisdictions, Columbia’s program was effective because of the clear and honest communications with donors, IRBs, and related stakeholders.  This example demonstrates that cultural acceptance of scientific research and of the idea that an egg or embryo does not have personhood is likely behind societal acceptance of donating eggs for ESC research. As noted, many countries do not permit the creation of embryos for research.

Proper communication and education regarding the process and purpose of stem cell research may bolster comprehension and garner more acceptance. “Given the sensitive subject material, a complete consent process can support voluntary participation through trust, understanding, and ethical norms from the cultures and morals participants value. This can be hard for researchers entering countries of different socioeconomic stability, with different languages and different societal values. [72]

An adequate moral foundation in medical ethics is derived from the cultural and religious basis that informs knowledge and actions. [73] Understanding local cultural and religious values and their impact on research could help researchers develop humility and promote inclusion.

IV.     Concerns

Some may argue that if researchers all adhere to one ethics standard, protection will be satisfied across all borders, and the global public will trust researchers. However, defining what needs to be protected and how to define such research standards is very specific to the people to which standards are applied. We suggest that applying one uniform guide cannot accurately protect each individual because we all possess our own perceptions and interpretations of social values. [74] Therefore, the issue of not adjusting to the moral pluralism between peoples in applying one standard of ethics can be resolved by building out ethics models that can be adapted to different cultures and religions.

Other concerns include medical tourism, which may promote health inequities. [75] Some countries may develop and approve products derived from ESC research before others, compromising research ethics or drug approval processes. There are also concerns about the sale of unauthorized stem cell treatments, for example, those without FDA approval in the United States. Countries with robust research infrastructures may be tempted to attract medical tourists, and some customers will have false hopes based on aggressive publicity of unproven treatments. [76]

For example, in China, stem cell clinics can market to foreign clients who are not protected under the regulatory regimes. Companies employ a marketing strategy of “ethically friendly” therapies. Specifically, in the case of Beike, China’s leading stem cell tourism company and sprouting network, ethical oversight of administrators or health bureaus at one site has “the unintended consequence of shifting questionable activities to another node in Beike's diffuse network.” [77] In contrast, Jordan is aware of stem cell research’s potential abuse and its own status as a “health-care hub.” Jordan’s expanded regulations include preserving the interests of individuals in clinical trials and banning private companies from ESC research to preserve transparency and the integrity of research practices. [78]

The social priorities of the community are also a concern. The ISSCR explicitly states that guidelines “should be periodically revised to accommodate scientific advances, new challenges, and evolving social priorities.” [79] The adaptable ethics model extends this consideration further by addressing whether research is warranted given the varying degrees of socioeconomic conditions, political stability, and healthcare accessibilities and limitations. An ethical approach would require discussion about resource allocation and appropriate distribution of funds. [80]

While some religions emphasize the sanctity of life from conception, which may lead to public opposition to ESC research, others encourage ESC research due to its potential for healing and alleviating human pain. Many countries have special regulations that balance local views on embryonic personhood, the benefits of research as individual or societal goods, and the protection of human research subjects. To foster understanding and constructive dialogue, global policy frameworks should prioritize the protection of universal human rights, transparency, and informed consent. In addition to these foundational global policies, we recommend tailoring local guidelines to reflect the diverse cultural and religious perspectives of the populations they govern. Ethics models should be adapted to local populations to effectively establish research protections, growth, and possibilities of stem cell research.

For example, in countries with strong beliefs in the moral sanctity of embryos or heavy religious restrictions, an adaptive model can allow for discussion instead of immediate rejection. In countries with limited individual rights and voice in science policy, an adaptive model ensures cultural, moral, and religious views are taken into consideration, thereby building social inclusion. While this ethical consideration by the government may not give a complete voice to every individual, it will help balance policies and maintain the diverse perspectives of those it affects. Embracing an adaptive ethics model of ESC research promotes open-minded dialogue and respect for the importance of human belief and tradition. By actively engaging with cultural and religious values, researchers can better handle disagreements and promote ethical research practices that benefit each society.

This brief exploration of the religious and cultural differences that impact ESC research reveals the nuances of relative ethics and highlights a need for local policymakers to apply a more intense adaptive model.

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[5] Concerning the moral philosophies of stem cell research, our paper does not posit a personal moral stance nor delve into the “when” of human life begins. To read further about the philosophical debate, consider the following sources:

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[7] Socially, at its core, the Western approach to ethics is widely principle-based, autonomy being one of the key factors to ensure a fundamental respect for persons within research. For information regarding autonomy in research, see: Department of Health, Education, and Welfare, & National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (1978). The Belmont Report. Ethical principles and guidelines for the protection of human subjects of research.; For a more in-depth review of autonomy within the US, see: Beauchamp, T. L., & Childress, J. F. (1994). Principles of Biomedical Ethics . Oxford University Press.

[8] Sherley v. Sebelius , 644 F.3d 388 (D.C. Cir. 2011), citing 45 C.F.R. 46.204(b) and [42 U.S.C. § 289g(b)]. https://www.cadc.uscourts.gov/internet/opinions.nsf/6c690438a9b43dd685257a64004ebf99/$file/11-5241-1391178.pdf

[9] Stem Cell Research Enhancement Act of 2005, H. R. 810, 109 th Cong. (2001). https://www.govtrack.us/congress/bills/109/hr810/text ; Bush, G. W. (2006, July 19). Message to the House of Representatives . National Archives and Records Administration. https://georgewbush-whitehouse.archives.gov/news/releases/2006/07/20060719-5.html

[10] National Archives and Records Administration. (2009, March 9). Executive order 13505 -- removing barriers to responsible scientific research involving human stem cells . National Archives and Records Administration. https://obamawhitehouse.archives.gov/the-press-office/removing-barriers-responsible-scientific-research-involving-human-stem-cells

[11] Hurlbut, W. B. (2006). Science, Religion, and the Politics of Stem Cells.  Social Research ,  73 (3), 819–834. http://www.jstor.org/stable/40971854

[12] Akpa-Inyang, Francis & Chima, Sylvester. (2021). South African traditional values and beliefs regarding informed consent and limitations of the principle of respect for autonomy in African communities: a cross-cultural qualitative study. BMC Medical Ethics . 22. 10.1186/s12910-021-00678-4.

[13] Source for further reading: Tangwa G. B. (2007). Moral status of embryonic stem cells: perspective of an African villager. Bioethics , 21(8), 449–457. https://doi.org/10.1111/j.1467-8519.2007.00582.x , see also Mnisi, F. M. (2020). An African analysis based on ethics of Ubuntu - are human embryonic stem cell patents morally justifiable? African Insight , 49 (4).

[14] Jecker, N. S., & Atuire, C. (2021). Bioethics in Africa: A contextually enlightened analysis of three cases. Developing World Bioethics , 22 (2), 112–122. https://doi.org/10.1111/dewb.12324

[15] Jecker, N. S., & Atuire, C. (2021). Bioethics in Africa: A contextually enlightened analysis of three cases. Developing World Bioethics, 22(2), 112–122. https://doi.org/10.1111/dewb.12324

[16] Jackson, C.S., Pepper, M.S. Opportunities and barriers to establishing a cell therapy programme in South Africa.  Stem Cell Res Ther   4 , 54 (2013). https://doi.org/10.1186/scrt204 ; Pew Research Center. (2014, May 1). Public health a major priority in African nations . Pew Research Center’s Global Attitudes Project. https://www.pewresearch.org/global/2014/05/01/public-health-a-major-priority-in-african-nations/

[17] Department of Health Republic of South Africa. (2021). Health Research Priorities (revised) for South Africa 2021-2024 . National Health Research Strategy. https://www.health.gov.za/wp-content/uploads/2022/05/National-Health-Research-Priorities-2021-2024.pdf

[18] Oosthuizen, H. (2013). Legal and Ethical Issues in Stem Cell Research in South Africa. In: Beran, R. (eds) Legal and Forensic Medicine. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-642-32338-6_80 , see also: Gaobotse G (2018) Stem Cell Research in Africa: Legislation and Challenges. J Regen Med 7:1. doi: 10.4172/2325-9620.1000142

[19] United States Bureau of Citizenship and Immigration Services. (1998). Tunisia: Information on the status of Christian conversions in Tunisia . UNHCR Web Archive. https://webarchive.archive.unhcr.org/20230522142618/https://www.refworld.org/docid/3df0be9a2.html

[20] Gaobotse, G. (2018) Stem Cell Research in Africa: Legislation and Challenges. J Regen Med 7:1. doi: 10.4172/2325-9620.1000142

[21] Kooli, C. Review of assisted reproduction techniques, laws, and regulations in Muslim countries.  Middle East Fertil Soc J   24 , 8 (2020). https://doi.org/10.1186/s43043-019-0011-0 ; Gaobotse, G. (2018) Stem Cell Research in Africa: Legislation and Challenges. J Regen Med 7:1. doi: 10.4172/2325-9620.1000142

[22] Pang M. C. (1999). Protective truthfulness: the Chinese way of safeguarding patients in informed treatment decisions. Journal of medical ethics , 25(3), 247–253. https://doi.org/10.1136/jme.25.3.247

[23] Wang, L., Wang, F., & Zhang, W. (2021). Bioethics in China’s biosecurity law: Forms, effects, and unsettled issues. Journal of law and the biosciences , 8(1).  https://doi.org/10.1093/jlb/lsab019 https://academic.oup.com/jlb/article/8/1/lsab019/6299199

[24] Wang, Y., Xue, Y., & Guo, H. D. (2022). Intervention effects of traditional Chinese medicine on stem cell therapy of myocardial infarction.  Frontiers in pharmacology ,  13 , 1013740. https://doi.org/10.3389/fphar.2022.1013740

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[28] Zhang, J. Y. (2017). Lost in translation? accountability and governance of Clinical Stem Cell Research in China. Regenerative Medicine , 12 (6), 647–656. https://doi.org/10.2217/rme-2017-0035

[29] Wang, L., Wang, F., & Zhang, W. (2021). Bioethics in China’s biosecurity law: Forms, effects, and unsettled issues. Journal of law and the biosciences , 8(1).  https://doi.org/10.1093/jlb/lsab019 https://academic.oup.com/jlb/article/8/1/lsab019/6299199

[30] Chen, H., Wei, T., Wang, H.  et al.  Association of China’s two-child policy with changes in number of births and birth defects rate, 2008–2017.  BMC Public Health   22 , 434 (2022). https://doi.org/10.1186/s12889-022-12839-0

[31] Azuma, K. Regulatory Landscape of Regenerative Medicine in Japan.  Curr Stem Cell Rep   1 , 118–128 (2015). https://doi.org/10.1007/s40778-015-0012-6

[32] Harris, R. (2005, May 19). Researchers Report Advance in Stem Cell Production . NPR. https://www.npr.org/2005/05/19/4658967/researchers-report-advance-in-stem-cell-production

[33] Park, S. (2012). South Korea steps up stem-cell work.  Nature . https://doi.org/10.1038/nature.2012.10565

[34] Resnik, D. B., Shamoo, A. E., & Krimsky, S. (2006). Fraudulent human embryonic stem cell research in South Korea: lessons learned.  Accountability in research ,  13 (1), 101–109. https://doi.org/10.1080/08989620600634193 .

[35] Alahmad, G., Aljohani, S., & Najjar, M. F. (2020). Ethical challenges regarding the use of stem cells: interviews with researchers from Saudi Arabia. BMC medical ethics, 21(1), 35. https://doi.org/10.1186/s12910-020-00482-6

[36] Association for the Advancement of Blood and Biotherapies.  https://www.aabb.org/regulatory-and-advocacy/regulatory-affairs/regulatory-for-cellular-therapies/international-competent-authorities/saudi-arabia

[37] Alahmad, G., Aljohani, S., & Najjar, M. F. (2020). Ethical challenges regarding the use of stem cells: Interviews with researchers from Saudi Arabia.  BMC medical ethics ,  21 (1), 35. https://doi.org/10.1186/s12910-020-00482-6

[38] Alahmad, G., Aljohani, S., & Najjar, M. F. (2020). Ethical challenges regarding the use of stem cells: Interviews with researchers from Saudi Arabia. BMC medical ethics , 21(1), 35. https://doi.org/10.1186/s12910-020-00482-6

Culturally, autonomy practices follow a relational autonomy approach based on a paternalistic deontological health care model. The adherence to strict international research policies and religious pillars within the regulatory environment is a great foundation for research ethics. However, there is a need to develop locally targeted ethics approaches for research (as called for in Alahmad, G., Aljohani, S., & Najjar, M. F. (2020). Ethical challenges regarding the use of stem cells: interviews with researchers from Saudi Arabia. BMC medical ethics, 21(1), 35. https://doi.org/10.1186/s12910-020-00482-6), this decision-making approach may help advise a research decision model. For more on the clinical cultural autonomy approaches, see: Alabdullah, Y. Y., Alzaid, E., Alsaad, S., Alamri, T., Alolayan, S. W., Bah, S., & Aljoudi, A. S. (2022). Autonomy and paternalism in Shared decision‐making in a Saudi Arabian tertiary hospital: A cross‐sectional study. Developing World Bioethics , 23 (3), 260–268. https://doi.org/10.1111/dewb.12355 ; Bukhari, A. A. (2017). Universal Principles of Bioethics and Patient Rights in Saudi Arabia (Doctoral dissertation, Duquesne University). https://dsc.duq.edu/etd/124; Ladha, S., Nakshawani, S. A., Alzaidy, A., & Tarab, B. (2023, October 26). Islam and Bioethics: What We All Need to Know . Columbia University School of Professional Studies. https://sps.columbia.edu/events/islam-and-bioethics-what-we-all-need-know

[39] Ababneh, M. A., Al-Azzam, S. I., Alzoubi, K., Rababa’h, A., & Al Demour, S. (2021). Understanding and attitudes of the Jordanian public about clinical research ethics.  Research Ethics ,  17 (2), 228-241.  https://doi.org/10.1177/1747016120966779

[40] Ababneh, M. A., Al-Azzam, S. I., Alzoubi, K., Rababa’h, A., & Al Demour, S. (2021). Understanding and attitudes of the Jordanian public about clinical research ethics.  Research Ethics ,  17 (2), 228-241.  https://doi.org/10.1177/1747016120966779

[41] Dajani, R. (2014). Jordan’s stem-cell law can guide the Middle East.  Nature  510, 189. https://doi.org/10.1038/510189a

[42] Dajani, R. (2014). Jordan’s stem-cell law can guide the Middle East.  Nature  510, 189. https://doi.org/10.1038/510189a

[43] The EU’s definition of autonomy relates to the capacity for creating ideas, moral insight, decisions, and actions without constraint, personal responsibility, and informed consent. However, the EU views autonomy as not completely able to protect individuals and depends on other principles, such as dignity, which “expresses the intrinsic worth and fundamental equality of all human beings.” Rendtorff, J.D., Kemp, P. (2019). Four Ethical Principles in European Bioethics and Biolaw: Autonomy, Dignity, Integrity and Vulnerability. In: Valdés, E., Lecaros, J. (eds) Biolaw and Policy in the Twenty-First Century. International Library of Ethics, Law, and the New Medicine, vol 78. Springer, Cham. https://doi.org/10.1007/978-3-030-05903-3_3

[44] Council of Europe. Convention for the protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine (ETS No. 164) https://www.coe.int/en/web/conventions/full-list?module=treaty-detail&treatynum=164 (forbidding the creation of embryos for research purposes only, and suggests embryos in vitro have protections.); Also see Drabiak-Syed B. K. (2013). New President, New Human Embryonic Stem Cell Research Policy: Comparative International Perspectives and Embryonic Stem Cell Research Laws in France.  Biotechnology Law Report ,  32 (6), 349–356. https://doi.org/10.1089/blr.2013.9865

[45] Rendtorff, J.D., Kemp, P. (2019). Four Ethical Principles in European Bioethics and Biolaw: Autonomy, Dignity, Integrity and Vulnerability. In: Valdés, E., Lecaros, J. (eds) Biolaw and Policy in the Twenty-First Century. International Library of Ethics, Law, and the New Medicine, vol 78. Springer, Cham. https://doi.org/10.1007/978-3-030-05903-3_3

[46] Tomuschat, C., Currie, D. P., Kommers, D. P., & Kerr, R. (Trans.). (1949, May 23). Basic law for the Federal Republic of Germany. https://www.btg-bestellservice.de/pdf/80201000.pdf

[47] Regulation of Stem Cell Research in Germany . Eurostemcell. (2017, April 26). https://www.eurostemcell.org/regulation-stem-cell-research-germany

[48] Regulation of Stem Cell Research in Finland . Eurostemcell. (2017, April 26). https://www.eurostemcell.org/regulation-stem-cell-research-finland

[49] Regulation of Stem Cell Research in Spain . Eurostemcell. (2017, April 26). https://www.eurostemcell.org/regulation-stem-cell-research-spain

[50] Some sources to consider regarding ethics models or regulatory oversights of other cultures not covered:

Kara MA. Applicability of the principle of respect for autonomy: the perspective of Turkey. J Med Ethics. 2007 Nov;33(11):627-30. doi: 10.1136/jme.2006.017400. PMID: 17971462; PMCID: PMC2598110.

Ugarte, O. N., & Acioly, M. A. (2014). The principle of autonomy in Brazil: one needs to discuss it ...  Revista do Colegio Brasileiro de Cirurgioes ,  41 (5), 374–377. https://doi.org/10.1590/0100-69912014005013

Bharadwaj, A., & Glasner, P. E. (2012). Local cells, global science: The rise of embryonic stem cell research in India . Routledge.

For further research on specific European countries regarding ethical and regulatory framework, we recommend this database: Regulation of Stem Cell Research in Europe . Eurostemcell. (2017, April 26). https://www.eurostemcell.org/regulation-stem-cell-research-europe   

[51] Klitzman, R. (2006). Complications of culture in obtaining informed consent. The American Journal of Bioethics, 6(1), 20–21. https://doi.org/10.1080/15265160500394671 see also: Ekmekci, P. E., & Arda, B. (2017). Interculturalism and Informed Consent: Respecting Cultural Differences without Breaching Human Rights.  Cultura (Iasi, Romania) ,  14 (2), 159–172.; For why trust is important in research, see also: Gray, B., Hilder, J., Macdonald, L., Tester, R., Dowell, A., & Stubbe, M. (2017). Are research ethics guidelines culturally competent?  Research Ethics ,  13 (1), 23-41.  https://doi.org/10.1177/1747016116650235

[52] The Qur'an  (M. Khattab, Trans.). (1965). Al-Mu’minun, 23: 12-14. https://quran.com/23

[53] Lenfest, Y. (2017, December 8). Islam and the beginning of human life . Bill of Health. https://blog.petrieflom.law.harvard.edu/2017/12/08/islam-and-the-beginning-of-human-life/

[54] Aksoy, S. (2005). Making regulations and drawing up legislation in Islamic countries under conditions of uncertainty, with special reference to embryonic stem cell research. Journal of Medical Ethics , 31: 399-403.; see also: Mahmoud, Azza. "Islamic Bioethics: National Regulations and Guidelines of Human Stem Cell Research in the Muslim World." Master's thesis, Chapman University, 2022. https://doi.org/10.36837/ chapman.000386

[55] Rashid, R. (2022). When does Ensoulment occur in the Human Foetus. Journal of the British Islamic Medical Association , 12 (4). ISSN 2634 8071. https://www.jbima.com/wp-content/uploads/2023/01/2-Ethics-3_-Ensoulment_Rafaqat.pdf.

[56] Sivaraman, M. & Noor, S. (2017). Ethics of embryonic stem cell research according to Buddhist, Hindu, Catholic, and Islamic religions: perspective from Malaysia. Asian Biomedicine,8(1) 43-52.  https://doi.org/10.5372/1905-7415.0801.260

[57] Jafari, M., Elahi, F., Ozyurt, S. & Wrigley, T. (2007). 4. Religious Perspectives on Embryonic Stem Cell Research. In K. Monroe, R. Miller & J. Tobis (Ed.),  Fundamentals of the Stem Cell Debate: The Scientific, Religious, Ethical, and Political Issues  (pp. 79-94). Berkeley: University of California Press.  https://escholarship.org/content/qt9rj0k7s3/qt9rj0k7s3_noSplash_f9aca2e02c3777c7fb76ea768ba458f0.pdf https://doi.org/10.1525/9780520940994-005

[58] Lecso, P. A. (1991). The Bodhisattva Ideal and Organ Transplantation.  Journal of Religion and Health ,  30 (1), 35–41. http://www.jstor.org/stable/27510629 ; Bodhisattva, S. (n.d.). The Key of Becoming a Bodhisattva . A Guide to the Bodhisattva Way of Life. http://www.buddhism.org/Sutras/2/BodhisattvaWay.htm

[59] There is no explicit religious reference to when life begins or how to conduct research that interacts with the concept of life. However, these are relevant verses pertaining to how the fetus is viewed. (( King James Bible . (1999). Oxford University Press. (original work published 1769))

Jerimiah 1: 5 “Before I formed thee in the belly I knew thee; and before thou camest forth out of the womb I sanctified thee…”

In prophet Jerimiah’s insight, God set him apart as a person known before childbirth, a theme carried within the Psalm of David.

Psalm 139: 13-14 “…Thou hast covered me in my mother's womb. I will praise thee; for I am fearfully and wonderfully made…”

These verses demonstrate David’s respect for God as an entity that would know of all man’s thoughts and doings even before birth.

[60] It should be noted that abortion is not supported as well.

[61] The Vatican. (1987, February 22). Instruction on Respect for Human Life in Its Origin and on the Dignity of Procreation Replies to Certain Questions of the Day . Congregation For the Doctrine of the Faith. https://www.vatican.va/roman_curia/congregations/cfaith/documents/rc_con_cfaith_doc_19870222_respect-for-human-life_en.html

[62] The Vatican. (2000, August 25). Declaration On the Production and the Scientific and Therapeutic Use of Human Embryonic Stem Cells . Pontifical Academy for Life. https://www.vatican.va/roman_curia/pontifical_academies/acdlife/documents/rc_pa_acdlife_doc_20000824_cellule-staminali_en.html ; Ohara, N. (2003). Ethical Consideration of Experimentation Using Living Human Embryos: The Catholic Church’s Position on Human Embryonic Stem Cell Research and Human Cloning. Department of Obstetrics and Gynecology . Retrieved from https://article.imrpress.com/journal/CEOG/30/2-3/pii/2003018/77-81.pdf.

[63] Smith, G. A. (2022, May 23). Like Americans overall, Catholics vary in their abortion views, with regular mass attenders most opposed . Pew Research Center. https://www.pewresearch.org/short-reads/2022/05/23/like-americans-overall-catholics-vary-in-their-abortion-views-with-regular-mass-attenders-most-opposed/

[64] Rosner, F., & Reichman, E. (2002). Embryonic stem cell research in Jewish law. Journal of halacha and contemporary society , (43), 49–68.; Jafari, M., Elahi, F., Ozyurt, S. & Wrigley, T. (2007). 4. Religious Perspectives on Embryonic Stem Cell Research. In K. Monroe, R. Miller & J. Tobis (Ed.),  Fundamentals of the Stem Cell Debate: The Scientific, Religious, Ethical, and Political Issues  (pp. 79-94). Berkeley: University of California Press.  https://escholarship.org/content/qt9rj0k7s3/qt9rj0k7s3_noSplash_f9aca2e02c3777c7fb76ea768ba458f0.pdf https://doi.org/10.1525/9780520940994-005

[65] Schenker J. G. (2008). The beginning of human life: status of embryo. Perspectives in Halakha (Jewish Religious Law).  Journal of assisted reproduction and genetics ,  25 (6), 271–276. https://doi.org/10.1007/s10815-008-9221-6

[66] Ruttenberg, D. (2020, May 5). The Torah of Abortion Justice (annotated source sheet) . Sefaria. https://www.sefaria.org/sheets/234926.7?lang=bi&with=all&lang2=en

[67] Jafari, M., Elahi, F., Ozyurt, S. & Wrigley, T. (2007). 4. Religious Perspectives on Embryonic Stem Cell Research. In K. Monroe, R. Miller & J. Tobis (Ed.),  Fundamentals of the Stem Cell Debate: The Scientific, Religious, Ethical, and Political Issues  (pp. 79-94). Berkeley: University of California Press.  https://escholarship.org/content/qt9rj0k7s3/qt9rj0k7s3_noSplash_f9aca2e02c3777c7fb76ea768ba458f0.pdf https://doi.org/10.1525/9780520940994-005

[68] Gert, B. (2007). Common morality: Deciding what to do . Oxford Univ. Press.

[69] World Medical Association (2013). World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA , 310(20), 2191–2194. https://doi.org/10.1001/jama.2013.281053 Declaration of Helsinki – WMA – The World Medical Association .; see also: National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. (1979).  The Belmont report: Ethical principles and guidelines for the protection of human subjects of research . U.S. Department of Health and Human Services.  https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html

[70] Zakarin Safier, L., Gumer, A., Kline, M., Egli, D., & Sauer, M. V. (2018). Compensating human subjects providing oocytes for stem cell research: 9-year experience and outcomes.  Journal of assisted reproduction and genetics ,  35 (7), 1219–1225. https://doi.org/10.1007/s10815-018-1171-z https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6063839/ see also: Riordan, N. H., & Paz Rodríguez, J. (2021). Addressing concerns regarding associated costs, transparency, and integrity of research in recent stem cell trial. Stem Cells Translational Medicine , 10 (12), 1715–1716. https://doi.org/10.1002/sctm.21-0234

[71] Klitzman, R., & Sauer, M. V. (2009). Payment of egg donors in stem cell research in the USA.  Reproductive biomedicine online ,  18 (5), 603–608. https://doi.org/10.1016/s1472-6483(10)60002-8

[72] Krosin, M. T., Klitzman, R., Levin, B., Cheng, J., & Ranney, M. L. (2006). Problems in comprehension of informed consent in rural and peri-urban Mali, West Africa.  Clinical trials (London, England) ,  3 (3), 306–313. https://doi.org/10.1191/1740774506cn150oa

[73] Veatch, Robert M.  Hippocratic, Religious, and Secular Medical Ethics: The Points of Conflict . Georgetown University Press, 2012.

[74] Msoroka, M. S., & Amundsen, D. (2018). One size fits not quite all: Universal research ethics with diversity.  Research Ethics ,  14 (3), 1-17.  https://doi.org/10.1177/1747016117739939

[75] Pirzada, N. (2022). The Expansion of Turkey’s Medical Tourism Industry.  Voices in Bioethics ,  8 . https://doi.org/10.52214/vib.v8i.9894

[76] Stem Cell Tourism: False Hope for Real Money . Harvard Stem Cell Institute (HSCI). (2023). https://hsci.harvard.edu/stem-cell-tourism , See also: Bissassar, M. (2017). Transnational Stem Cell Tourism: An ethical analysis.  Voices in Bioethics ,  3 . https://doi.org/10.7916/vib.v3i.6027

[77] Song, P. (2011) The proliferation of stem cell therapies in post-Mao China: problematizing ethical regulation,  New Genetics and Society , 30:2, 141-153, DOI:  10.1080/14636778.2011.574375

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Mifrah Hayath

SM Candidate Harvard Medical School, MS Biotechnology Johns Hopkins University

Olivia Bowers

MS Bioethics Columbia University (Disclosure: affiliated with Voices in Bioethics)

Article Details

This work is licensed under a Creative Commons Attribution 4.0 International License .

Do E-Cigarette Retail Licensure Laws Reduce Tobacco Use?

E-cigarette licensure laws (ELLs) require retailers to obtain a state license to sell e-cigarettes over the counter. This study is the first to comprehensively explore the effect of ELL adoption on youth and adult tobacco product use. Using data from the State Youth Risk Behavior Survey (YRBS) and a difference-in-differences approach, we find no evidence that ELL adoption reduces overall youth ENDS use. The precision of our estimates allows us to rule out, with 95 percent confidence, ELL-induced prior-month youth ENDS use declines of more than 3.4 percent. The pattern of null findings persists when we examine ELLs that impose (1) higher penalties for retailer non-compliance, (2) higher renewable licensure fees, and (3) criminal as compared to civil penalties. However, we do uncover evidence that adoption of ELLs with higher penalties associated with a modest reduction in ENDS use among Black teens. We conclude that ELLs have only limited success in curbing access to ENDS.

Dr. Sabia acknowledges research support for this work from the Center for Health Economics & Policy Studies (CHEPS) at San Diego State University (SDSU), which has received grants from the Charles Koch Foundation. This study was funded, in part, with a grant from the Foundation for a Smoke- Free World, Inc. ("FSFW'), a U.S. nonprofit 501(c)(3) private foundation. This study is, under the terms of the grant agreement with FSFW, editorially independent of FSFW. The contents, selection and presentation of facts, as well as any opinions expressed herein, are the sole responsibility of the authors and under no circumstances should they be regarded as reflecting the positions of FSFW. FSFW's mission is to end smoking in this generation. Dr. Sabia also acknowledges research support from a subcontract by Georgia State University in 2023 – via a grant received from the National Institute on Drug Abuse of the National Institutes of Health under Award Number R01DA045016 – to support exploratory work on this project. The views expressed herein are those of the authors and do not necessarily reflect the views of the National Institutes of Health. We thank Erik Nesson and Chad Cotti for sharing their ENDS tax data with us. We thank Anthony Chuo and Christian Pryfogle for outstanding research assistance. All errors are the authors’. The views expressed herein are those of the authors and do not necessarily reflect the views of the National Bureau of Economic Research.

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Published on 16.5.2024 in Vol 26 (2024)

Person-Generated Health Data in Women’s Health: Scoping Review

Authors of this article:

• Jalisa Lynn Karim 1 , BA, BMath   ; 
• Rachel Wan 1 , BSc, BSN, RN   ; 
• Rhea S Tabet 2 , BSc   ; 
• Derek S Chiu 3 , BSc, MSc   ; 
• Aline Talhouk 1 , BA, MSc, PhD  

1 Department of Obstetrics and Gynaecology, University of British Columbia, Vancouver, BC, Canada

2 Department of Pharmacology and Therapeutics, McGill University, Montréal, QC, Canada

3 Department of Molecular Oncology, University of British Columbia, Vancouver, BC, Canada

Corresponding Author:

Aline Talhouk, BA, MSc, PhD

Department of Obstetrics and Gynaecology

University of British Columbia

593 - 828 West 10th Ave

Vancouver, BC, V5Z 1M9

Phone: 1 604 875 3111

Email: [email protected]

Background: The increased pervasiveness of digital health technology is producing large amounts of person-generated health data (PGHD). These data can empower people to monitor their health to promote prevention and management of disease. Women make up one of the largest groups of consumers of digital self-tracking technology.

Objective: In this scoping review, we aimed to (1) identify the different areas of women’s health monitored using PGHD from connected health devices, (2) explore personal metrics collected through these technologies, and (3) synthesize facilitators of and barriers to women’s adoption and use of connected health devices.

Methods: Following the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines for scoping reviews, we searched 5 databases for articles published between January 1, 2015, and February 29, 2020. Papers were included if they targeted women or female individuals and incorporated digital health tools that collected PGHD outside a clinical setting.

Results: We included a total of 406 papers in this review. Articles on the use of PGHD for women steadily increased from 2015 to 2020. The health areas that the articles focused on spanned several topics, with pregnancy and the postpartum period being the most prevalent followed by cancer. Types of digital health used to collect PGHD included mobile apps, wearables, websites, the Internet of Things or smart devices, 2-way messaging, interactive voice response, and implantable devices. A thematic analysis of 41.4% (168/406) of the papers revealed 6 themes regarding facilitators of and barriers to women’s use of digital health technology for collecting PGHD: (1) accessibility and connectivity, (2) design and functionality, (3) accuracy and credibility, (4) audience and adoption, (5) impact on community and health service, and (6) impact on health and behavior.

Conclusions: Leading up to the COVID-19 pandemic, the adoption of digital health tools to address women’s health concerns was on a steady rise. The prominence of tools related to pregnancy and the postpartum period reflects the strong focus on reproductive health in women’s health research and highlights opportunities for digital technology development in other women’s health topics. Digital health technology was most acceptable when it was relevant to the target audience, was seen as user-friendly, and considered women’s personalization preferences while also ensuring accuracy of measurements and credibility of information. The integration of digital technologies into clinical care will continue to evolve, and factors such as liability and health care provider workload need to be considered. While acknowledging the diversity of individual needs, the use of PGHD can positively impact the self-care management of numerous women’s health journeys. The COVID-19 pandemic has ushered in increased adoption and acceptance of digital health technology. This study could serve as a baseline comparison for how this field has evolved as a result.

International Registered Report Identifier (IRRID): RR2-10.2196/26110

Introduction

The practice of keeping notes to monitor one’s health is not a recent phenomenon. Individuals have long recognized the benefits of tracking various health aspects, including the ability to be more active participants in managing their health, gaining a more complete picture of their health, and reducing the frequency of in-person appointments; however, this tracking was previously done through paper logs [ 1 ]. Today, with the proliferation of digital tools, self-tracking has significantly evolved and become more prevalent. The increasing pervasiveness of technology, particularly mobile phones, has seamlessly integrated it into our daily lives, making self-tracking more accessible and convenient than ever before [ 2 ]. Connected digital health technologies such as smartphones, wearables (eg, smartwatches), sensors, the Internet of Things (eg, internet-enabled weight scales), and web-based applications have permeated society and are increasingly adopted to collect and track health data. In 2021, a total of 87% of Canadians owned a smartphone, up by 73% from 2009 [ 3 ]. With >350,000 digital health apps accessible via these smartphones [ 4 ], approximately two-thirds of Canadians digitally track at least one aspect of their health [ 5 ]; similar statistics have been reported in the United States [ 6 ]. Moreover, since the introduction and popularization of fitness trackers in 2010, sensors and wearable devices have increasingly become part of daily life [ 2 ]. During the global COVID-19 pandemic, self-tracking took on even greater significance [ 7 , 8 ]. With the heightened awareness of health and the need for proactive measures, individuals have turned to self-tracking to monitor their well-being and make informed decisions. With this transformation, self-tracking has transcended its previous boundaries, offering individuals new opportunities to optimize their well-being and ushering in a new era of personalized health care [ 9 - 11 ].

Digital health tools have revolutionized the active and passive collection of health data through various applications and wearable devices. These various digital health tools collect and generate an unprecedented amount of data that can be used to glean insights into one’s health. Person-generated health data (PGHD), which are clinically relevant data captured outside traditional care settings [ 12 ], provide valuable insights that empower users to self-monitor and reflect on their health. PGHD can refer to any data collected from wearable and smart devices as well as self-input information into platforms such as mobile apps and websites. By leveraging digital technologies, individuals can collect and store their health data, enabling them to actively manage their own health and monitor chronic conditions. Furthermore, the integration of these data with research presents an opportunity to improve the patients’ experience and enhance personalized medicine. The recognition of this opportunity has started to take shape with patient-reported outcome measures and patient-reported experience measures being increasingly recognized as essential information to assess quality of care and prioritize patient-centered approaches and with mandatory assessment as part of clinical trials [ 13 ]. Seamlessly linking PGHD that are captured outside traditional care settings with clinical data and disease models can unlock new possibilities for tailored treatments and predictive informatics. The integration of digital health tools not only facilitates patient-provider communication but also offers opportunities for education, increased awareness, self-tracking, and self-monitoring without burdening health care resources. By focusing on the individual’s experience, personalization, and prevention, digital health tools contribute to a patient-centered care paradigm that aims to optimize health care outcomes and improve overall well-being while empowering patients to take charge of their health.

In recent years, the emergence of femtech, defined as technology-driven solutions specifically designed to address women’s health needs and concerns, has revolutionized the landscape of self-tracking and health care for women [ 14 ]. Femtech encompasses a wide range of digital tools, such as period-tracking apps, fertility monitors, pregnancy trackers, and menopause management platforms. These innovative solutions empower women to track and manage their reproductive health, menstrual cycles, and overall well-being with greater accuracy and ease. Femtech has not only provided women with personalized insights into their bodies but has also helped break taboos and encouraged open conversations about topics that were once stigmatized or ignored. The rapid growth of femtech has promoted access to women’s health information, greater autonomy in decision-making, and enhanced overall health care experiences for women worldwide. It has become an integral part of the self-tracking movement, demonstrating the transformative power of technology in promoting women’s health and well-being.

In this study, we reviewed the use of digital tools and PGHD in women’s health research, focusing on articles published between January 1, 2015, and February 29, 2020, before the COVID-19 pandemic. Our review encompassed various connected health devices, which included both passive data collection devices such as wearable sensors and active input devices such as smartphone apps and websites. This review sought to accomplish the following:

• Identify the different areas of women’s health and health-related behaviors monitored using PGHD from connected health devices.
• Explore personal metrics collected through these technologies.
• Synthesize facilitators and barriers that impact women’s adoption and use of connected health devices in managing their health.

This scoping review was conducted based on our previously published protocol [ 15 ]. We adopted the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines [ 16 ]. The completed checklist is provided in Multimedia Appendix 1 [ 16 ].

Search Strategy

The search strategy was designed in close collaboration with a reference librarian with input from the authors (JLK and AT). We searched a total of 5 databases: MEDLINE, Embase, APA PsycINFO, CINAHL Complete, and Web of Science Core Collection. Initial searches were completed in early March 2020. Searches were limited to articles published in 2015 or later because publications with the keyword “digital health” started to emerge in the literature around that time [ 17 ], and with the fast evolution of the field, previous articles may not be relevant to the current landscape. Keywords and subject headings were designed to search the literature for the intersection of the following 4 topics: women, health, digital devices, and tracking. The full search strategy, including a full list of search terms, was published with the protocol [ 15 ] and is available in Multimedia Appendix 2 .

Eligibility Criteria

We were interested in digital technologies and interventions targeting women and people assigned female at birth. To be included in the review, studies needed to specifically target women, focus on female-only health topics (eg, menstruation), or only include female participants. We included a variety of publication types but excluded conference abstracts and conference reviews, editorials, letters, and comments due to the limited details in such literature.

We excluded articles that presented digital health tools designed for health care providers as we were primarily interested in devices and apps that women can engage with outside a clinical setting. Articles only discussing the use of real-time consultations, whether through video, phone, or web-based chat, were excluded. We excluded articles that described digital health tools used solely for educational purposes; to maintain the focus of the review on tracking or monitoring one’s data for health, devices must have allowed users to input personal health data.

The complete inclusion and exclusion criteria are presented in Textbox 1 . We decided to retain the original inclusion end date of February 29, 2020, to maintain a focus on the literature before the COVID-19 pandemic and avoid potential complexities caused by pandemic-related disruptions in research and health care practices. Concentrating on prepandemic literature also established a clear baseline for future comparisons and allowed us to maintain feasibility of completion without compromising quality given the broad scope of the review.

Inclusion criteria

• Published between January 1, 2015, and February 29, 2020
• Refers to a health issue that pertains only to women or comprises only female participants of any age
• Includes the use of connected health tools for tracking or monitoring some aspect of health, which could include smartphone apps, wearable devices, the Internet of Things (eg, Bluetooth- or internet-enabled glucometers, blood pressure cuffs, and weight scales), and implantable devices
• Involves data collection from the user of the connected health tool (ie, the user either manually inputs data into the device or they are automatically uploaded)
• The user must be able to interact with the app or device on her own at home (outside a clinical setting)
• Available in English

Exclusion criteria

• Not available in English
• Conference abstracts, conference reviews, editorials, letters, or comments
• Study media releases and user reviews of specific applications
• Research conducted on animals
• Research involving male participants
• Tracking of infants and children unless tracking breastfeeding (because breastfeeding is directly related to the mother’s health and body)
• Devices or apps that are meant for health care provider use or use in a clinical setting only or cannot be used independently without a health care provider present
• Digital health tools that are only for educational or informational purposes and do not allow the user to enter or track her own data (ie, no information exchange)
• Telemedicine services (eg, live video consultations with health care providers)

Study Selection

We imported the results from the database searches to the Covidence systematic review software (Veritas Health Innovation). Covidence detected records believed to be duplicates, and these were manually checked before removing them. In addition, some articles were manually recognized as duplicates during the screening process and were subsequently tagged as duplicates and removed. Screening was conducted independently by at least 2 reviewers (JLK, RST, and AT) at both the abstract screening stage and the full-text screening stage. We attempted to contact the corresponding authors of articles that passed abstract screening when we were unable to locate the full text. Conflicts at either stage were discussed and agreed upon among the 3 authors involved in the screening process.

Data Charting and Deviations From the Protocol

The final list of data charting elements is provided in Textbox 2 . Data charting for all elements except for usability and acceptability was conducted using Google Sheets created by the study team. The categories for different data charting options were initially created based on a small subset of articles and were discussed among the authors involved in the charting process. The team met regularly throughout the data charting process to discuss and refine coding categories that best summarized the data. Starting with more granular categories and later combining them into broader concepts was necessary to summarize the number of articles included in this review. For each article included, data were charted by one reviewer (RW or RST) and verified for accuracy by a second reviewer (JLK). Data were summarized in bar graphs, maps, and tables (JLK, RST, and DSC), as presented in the following sections. For the locations, we recorded the countries from which the participants were recruited (if applicable). If an article did not describe recruiting participants, then the countries of the authors were recorded based on the authors’ affiliations.

Article information

• Year of first publication

Study characteristics

• Country or countries in which the research was conducted
• Research study type

Contexts for women’s connected health

• Health areas of focus

Digital device details

• Types of digital health
• Metrics collected by the devices

Usability and acceptability

• Facilitators of and barriers to the use of the technologies (coded into themes)

For the thematic analysis, articles that mentioned any aspect of usability, acceptability, facilitators, or barriers to the use of digital health tools were imported into NVivo (R1 2020; QSR International). Coding was done independently by 2 reviewers (JLK and RW) and then combined through discussions. As with the data charting process, we initially coded more granularly and then grouped the detailed codes together later in the analytic process. Decisions on how to group the codes into themes and subthemes were made through group consensus (JLK, RW, and AT).

In our protocol, we indicated that we would extract the name of the device or app used in each study. While we did complete this step in our data charting, we have not presented the results in this paper. Several articles either did not specify the brand name (eg, only specified that it was a mobile app) or had digital health tools named after the study, so we did not find this information useful to showcase in our results. There were no other deviations from the published protocol.

The searches identified 14,629 records that were imported into the Covidence software for deduplication and screening. After deduplication, a total of 9102 articles were screened for relevance, and 8545 (93.88%) were excluded based on title and abstract. From reading the full texts of the remaining 557 records, an additional 151 (27.1%) were excluded. The most common reasons for exclusion were the inability of study participants to enter or track their own data (58/151, 38.4%) or because the digital health technology was designed to be used by or with a health care provider (48/151, 31.8%). The remaining 406 publications were included in the scoping review. Some of the included publications reported on the same research project; in those cases, all of them were included. Our search did not encounter any articles that directly addressed or mentioned the inclusion of intersex, transgender, or nonbinary participants. The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) flow diagram detailing the full study selection process is shown in Figure 1 . The list of included articles sorted by health areas of focus can be found in Multimedia Appendix 3 [ 18 - 58 ].

Year and Country

There was an increasing trend in number of publications per year, with 10.1% (41/406) of the articles published in 2015, a total of 13.3% (54/406) of the articles published in 2016, a total of 18% (73/406) of the articles published in 2017, a total of 26.4% (107/406) of the articles published in 2018, and 29.6% (120/406) of the articles published in 2019. Only 2.7% (11/406) of the publications were from 2020 because our cutoff date for inclusion was February 29, 2020.

Articles included in the review covered worldwide research, including every continent except Antarctica ( Figure 2 ). As we only considered articles written in English, most of the articles were published in Western, English-speaking countries, primarily the United States (169/406, 41.6% of the articles), the United Kingdom (34/406, 8.4% of the articles), Australia (33/406, 8.1% of the articles), and Canada (19/406, 4.7% of the articles). Other countries where several included articles were published were China (13/406, 3.2% of the articles), the Netherlands (13/406, 3.2% of the articles), Spain (13/406, 3.2% of the articles), and Sweden (10/406, 2.5% of the articles).

Interestingly, of the 169 articles from the United States, 26 (15.4%) specifically focused on African American or Black, ethnic minority, or low-income women. One study from Singapore specifically included multiethnic women [ 18 ], and a study from Australia included Indigenous Australian women as their participants [ 19 ]. In addition, one review conducted by researchers in Australia looked specifically at studies with women from culturally and linguistically diverse backgrounds [ 20 ].

Study Types

The types of studies that used digital health tools in women’s health research are reported in Figure 3 by year of publication (note that the articles could fall into more than one study category). The most common study type encountered was feasibility or acceptability studies (197/406, 48.5% of the articles, including 9/197, 4.6% protocols), followed by effectiveness studies (146/406, 36% of the articles, including 36/146, 24.7% protocols) and publications reporting on digital tool prototypes (73/406, 18% of the articles). Effectiveness studies reported on outcome measures of an intervention, including randomized and nonrandomized trials with one or more study arms. Reviews (of published literature, apps, or wearables), viewpoints, manuals, case studies, or analytical methods (56/406, 13.8% of the articles combined) were also encountered. Observational or correlative studies (44/406, 10.8% of the articles, including 3/44, 7% protocols) were studies that observed the health behaviors of individuals through digital health technologies without assessing the effectiveness of an intervention or analyzed associations between variables (eg, associations between heart rate and loss-of-control eating) [ 21 ]. Finally, measurement studies (23/406, 5.7% of the articles) reported on the validity, reliability, or accuracy of a digital health tool.

Health Areas of Focus

The analysis of the reviewed articles highlighted research in several recurring women’s health areas of focus. A full breakdown of the health areas is reported in Table 1 (articles could fall into more than one health area). Pregnancy and the postpartum period emerged as the most prominent health area with 42.6% (173/406) of the articles. Within this category, there was a specific emphasis on general care and monitoring (45/173, 26% of the articles), physical activity and diet (34/173, 19.7% of the articles), and glucose monitoring (31/173, 17.9% of the articles). Cancer was identified as the second most common health area, with 19.5% (79/406) of the articles dedicated to its exploration. Specifically, a significant focus was observed on the relationship between cancer and cardiovascular health, with 47% (37/79) of the articles addressing this aspect. The impact of lifestyle on overall health and well-being was also addressed, with 14.3% (58/406) of the articles delving into physical activity, sedentary behavior, diet, weight, and obesity. Menstrual, sexual, and reproductive health were explored in 12.1% (49/406) of the articles to shed light on various aspects of women’s reproductive health and associated concerns, with 76% (37/49) focusing on menstrual cycle tracking or fertility monitoring. Furthermore, 9.9% (40/406) of the articles were dedicated to chronic conditions (such as urinary incontinence, osteoporosis, and diabetes) with the aim of enhancing understanding and developing interventions for individuals living with chronic health conditions. To accommodate articles that did not fit within the primary health areas, an Other category comprising 6.4% (26/406) of the articles was established. This category included articles on athlete monitoring (10/26, 38% of the articles), such as heart rate monitoring during sports tournaments; mental health and quality of life (9/26, 35% of the articles); gender-based violence (3/26, 12% of the articles); and more. Finally, a small subset of 0.5% (2/406) of the articles did not align with any specific health area; these included a publication reporting results from a survey on African American women’s willingness to participate in eHealth research [ 22 ] and a publication analyzing women’s interactions with digital health technologies [ 23 ]. These articles were included because, although they did not discuss a specific health area, they still focused on women’s use of digital health tools in general.

a PCOS: polycystic ovary syndrome.

b CVD: cardiovascular disease.

c COPD: chronic obstructive pulmonary disease.

d SLE: systemic lupus erythematosus.

e IC: interstitial cystitis.

f BPS: bladder pain syndrome.

g ABL: accidental bowel leakage.

Figure 4 shows how the health areas of focus for women’s use of digital health changed over the years that were included in the review (2015-2019 plus January 2020-February 2020). There was an increasing trend from 2015 to 2020 in the number of publications focusing on pregnancy and the postpartum period, as well as cancer and menstrual, sexual, and reproductive health. However, articles focused on women’s use of digital health for lifestyle-related topics and chronic conditions did not see a notable increase over those years.

Type of Digital Health and Metrics Collected

Within the articles reviewed, smartphone, mobile, or tablet apps emerged as the most prevalent type of digital health (295/406, 72.7% of the articles), followed by wearable devices (165/406, 40.6% of the articles) and websites or patient portals (93/406, 22.9% of the articles). Other types of technology were not investigated as much. For example, 13.5% (55/406) of the articles addressed smart devices or the Internet of Things (referring to objects with sensors that connect to a network, such as Bluetooth-enabled glucometers and blood pressure machines). Finally, 7.4% (30/406) of the articles reported on 2-way messaging, 1% (4/406) of the articles reported on interactive voice response telephone calls, and only 0.5% (2/406) of the articles reported on implantable devices. With respect to the metrics collected, we found >250 metrics, such as heart rate, number of steps, mood, ovulation test results, and days of menstruation. A full list of the metrics is reported in Multimedia Appendix 4 .

Thematic Analysis

Of the 406 articles included in this scoping review, 168 (41.4%) mentioned usability, acceptability, facilitators, or barriers to the use of digital health tools at least once. Our thematic analysis identified 6 themes: (1) accessibility and connectivity, (2) design and functionality, (3) accuracy and credibility, (4) audience and adoption, (5) impact on community and health service, and (6) impact on health and behavior. The themes are described in further detail in the following sections.

The thematic analysis detailed in the following sections is primarily based on the views of the participants in the studies we reviewed to provide a user perspective; however, one subsection in theme 5 focuses on the health care provider perspective.

Theme 1: Accessibility and Connectivity

The accessibility and connectivity of digital technologies emerged as an important theme with two subthemes: (1) cost and convenience and (2) connectivity, compatibility, and software issues.

Cost and Convenience

Our analysis revealed that the cost and convenience of digital tools collecting PGHD are important factors that can impact their adoption and use. On the one hand, digital health technologies can be seen as more affordable compared to traditional health care visits and more accessible to a wider range of people, including those of a lower socioeconomic status. On the other hand, they can also be perceived as too expensive and novelty items, and associated extra costs such as data plans can also be a barrier for some people. Because PGHD can be collected and entered throughout the day in real time, and because most people carry a phone around with them every day, these technologies offer greater convenience than traditional in-person health care encounters by providing anytime, anywhere virtual access and putting information at people’s fingertips through smartphones and web platforms. One user spoke about an in-app treatment program:

That was what was so good about this, I can do this at home myself, no need to book an appointment, find the time and suit others, and you know, that process of booking a time. [ 24 ]

Some inconvenient aspects of digital health technologies include uncomfortable wearables that are too bulky, difficulty of use, or not fitting into the users’ lifestyles, as noted in one article:

Women also mentioned that the comfort of the wearable sensors was a barrier. Comfort became a barrier for some women during exercise and hot weather. [ 25 ]

Devices with a short battery life and wearables that are not water resistant are also considered inconvenient as they require the user to frequently remember to charge the device or put the wearable back on after water-based activities. Certain restrictions, such as not being able to wear a device in a workplace, can also create inconvenient barriers for some users.

Connectivity, Compatibility, and Software Issues

Factors related to connectivity and other issues such as device synchronization, freezing, or disconnection can significantly impact the user experience and engagement with digital health tools. For example, the dependence on mobile and internet access can be a disadvantage. Cellphone and network coverage limitations can pose an important barrier in rural areas or during travel. Where mobile data or Wi-Fi connection are limited, people may struggle to use digital health tools that require internet connection; this can create disparities in access to health care resources, particularly for those of a lower socioeconomic status or living in remote communities with limited infrastructure. Incompatibility between operating systems such as Android and iOS, iPhone and iPad, or various browsers can also be an important barrier to accessing digital health technology.

Software issues can significantly impact the user experience of digital health technologies. Broken links can prevent users from accessing valuable information or features within apps or websites. App crashes can discourage users from engaging with the digital health tool altogether. In addition, slow loading times can negatively impact the user experience, making it challenging for users to access information or features quickly and efficiently.

Theme 2: Design and Functionality

The second theme centered on design and functionality and included four subthemes: (1) appearance and design; (2) functionality and features; (3) personalization; and (4) safety, privacy, and security.

Appearance and Design

Appearance and design play important roles in the success of connected health devices. In terms of app design, the color scheme and layout facilitate user-friendliness. Bad formatting can make it difficult for users to read or understand the content of an app or website. Font size that is too small can be challenging for those with visual impairments, and some color combinations can be difficult to read. The quality of the images used in digital health interventions can also impact user experience, with low-quality images potentially making it difficult for users to interpret the information being presented.

Apps that are visually appealing and easy to use are more likely to be successful. When it comes to wearables, women tend to prefer sleek, understated designs that are esthetically pleasing without being bulky. A sleek design can encourage use of the wearable. For example, some women consider their wearable to be a fashion item that sparks conversation, which encourages their continued use of the device, as illustrated in a participant quote:

Um, that it’s, like, kind of stylish, like, I feel, like, cool that I wear one. A lot of people ask me, they’re like, oh, which one is that, like, is that a Fitbit, is that an Apple watch? It has the interchangeable bands and stuff like that, so, you can, like, change the color of it and everything. It’s like a conversation piece. [ 26 ]

Other women prefer more discretion in the design of wearables and their size or in the app icon on their mobile device because they do not want to reveal the purpose of the device to others. People may feel self-conscious when wearing the device or using the app, especially if it reveals their medical condition. For example, the following quote is from a study that incorporated a sensor band worn on the wrist to help female undergraduate students with problematic drinking:

P310 noted that while in class, “my professor commented on it which made me feel awkward.” [ 27 ]

Functionality and Features

In terms of functionality, the availability of clinical interpretation of user data is deemed essential, and health warnings based on recorded PGHD are noted to be helpful. Moreover, notifications and reminders are also useful for improving adherence to self-tracking and maintaining goals, and users appreciate receiving automated SMS text messages and feedback on progress. Actionable advice is seen as very important, and women expressed a desire for more interaction and the ability to integrate with other apps. For example, users want the ability to access information from their health record and to be able to see graphical summaries of their data over time. Regarding the presentation of information, users appreciate concise information written in simple language. Choice of words is also perceived as especially important to ensure that the information is easy to understand. People enjoy the gamification of content, and the graphical presentation of results is found to be informative.

The ability to upload multimedia and the ability to customize the application’s displays and notifications are noted as features that improve user engagement and satisfaction. The ability to record voice notes and consultations within apps is noted as a desirable feature, as well as having the option to book appointments directly through apps. Women also want the option to sync their desktop or phone calendar with apps to remind them of medical appointments and prescription requests, as some researchers noted:

Women could see the potential usefulness of being reminded to order their next prescription through the electronic alerts system. They found managing the monthly prescription requests challenging long-term and found setting up the reminder easy with the alert popping up on their phone or tablet. [ 28 ]

The application also allows women to set appointment reminders to ensure she is not missing her appointments and developing gaps in her care [...] “It allows me to remain organized for my visits to my OB with concerns, questions, symptoms I have experienced since my last visit.” [ 29 ]

Issues that negatively impact user engagement and outcomes are the inability to edit information or unsubscribe from notifications, which are sometimes thought to be either inconvenient or intrusive, as well as the presence of advertisements within the app. Ease of use is essential as apps or websites that are difficult to navigate can discourage users from engaging with them. For example, a study including the use of a mobile phone app reported the following:

A hindrance and disliked aspect was the difficulty in navigating through the app (eg, no back button, clunkiness, and the inability of participants to edit their inputted daily goals) as well as a lack of color and visuals within the app, giving it a clinical appearance. [ 30 ]

Some women are not comfortable answering questions that they consider intrusive, such as those related to sexual health. They rely on applications to provide trusted information about their condition and want suggestions for additional resources such as website links and local information.

Personalization

Women generally expressed a desire for greater personalization across several features within digital health tools. Messages and notifications that are personalized to the user’s health and self-tracking history and goals are more motivational and less likely to be ignored or perceived as irritating. Even factors such as using a first name in messages from the app make women feel like the messages are more personal and supportive.

Users have individual preferences when it comes to the frequency and timing of notifications, and it is important for digital health apps to allow for the customization of these settings as they can greatly impact user engagement and adherence. Moreover, users expressed a desire for the ability to customize their goals and the metrics they tracked. For example, they may want to change their goals in an app when their life circumstances change (eg, moving, starting a new job, becoming pregnant, or sustaining an injury). The ability to customize the dashboard of an app or website according to the user’s goals was also expressed as a desired feature. The ability to make these customizations will improve their adherence in the long run as their goals evolve.

When it comes to wearables, their placement on the body influences users’ preference and adherence to their use. For example, some women may prefer a wrist-worn device, whereas others may prefer a chest strap, a ring, or a device worn on the waist or ankle. The type of activity being monitored may also influence placement preference. A wrist-worn device may be more appropriate for monitoring steps, whereas a chest strap may be better suited for monitoring heart rate during exercise. Furthermore, placement preference may also be influenced by factors such as comfort, convenience, and visibility. A user may prefer a wrist-worn device because it is more visible and easier to access, whereas another user may prefer a device worn on the waist because it is less obtrusive and more comfortable during exercise or sleep. For instance, one study found the following:

Eight of the participants (40%) reported at some point of the long study period that the smart wristbands were uncomfortable to wear, especially at night. The wristbands irritated the skin, possibly due to pregnancy-related swelling. [ 31 ]

Finally, users have different preferences for how they want information to be presented in an app or website. Some people prefer to read content that is written out with citations and links to external websites. Others enjoy learning content from videos or audio recordings. When looking at their trends and progress, some users like to look at detailed graphs showing their daily progress, whereas others prefer to look at the data occasionally and only receive high-level information. The challenges concerning personalization were articulated by several authors:

It’s a difficult one. Some women want the full picture to fully understand what they are taking. Others want a black and white sketch, but not the details. They just want to know enough. Others do not want to see the picture, they just want to get on with it without knowing too much. Catering for all is a challenge. [ 28 ]

Safety, Privacy, and Security

Women are sometimes concerned about the physical safety of certain devices. For example, some mothers worried about their wearable wristbands scratching their babies [ 31 ]. Others worried about the effects of wearable devices on their skin, as expressed by a participant:

It’s weird because it does have a little laser thing on it, and I wonder if that’s, like, harming my skin (laughing). Like, I’ll sleep in it, and when I wake up I’ll have a red spot on my arm, it’s itchy sometime or sensitive, and I think it’s because of the laser thing, but I don’t really know. [ 26 ]

Some women are concerned about the privacy and security of digital health technologies and expect appropriate safeguards to be implemented in the tools they use. However, privacy and data security are not a concern for all women:

As I said, I’m very critical about patient data in general, especially in terms of data security...If you have a free app, it really depends on what happens to the private data. As a matter of fact, usually the information is stored on the app itself, and so other apps might gain access to the data easily. [ 32 ]

The survey revealed a low level of concern about issues relating to privacy or security of personal data. This suggests that privacy concerns were secondary to the benefits offered by uploading personal details into apps to provide the type of customisation they seek. [ 33 ]

Researchers also shared that some users perceived there to be more privacy when using an app as compared to traditional ways of communicating:

Some participants perceived the storage of their glucose levels on the smartphone as more secure than their current registration in a booklet. [ 34 ]

Women, particularly those who worked outside of the home, also commented that they appreciated the added convenience and privacy of this [text-based] communication method over phone-based communication. [ 34 ]

Theme 3: Accuracy and Credibility

In theme 3, we identified accuracy and credibility as important factors for acceptability considerations in digital health technologies.

The accuracy of digital health can impact user trust and adoption. Digital health tools enable users to keep track of their health, symptoms, and behaviors over time without relying on memory recall, which can be inaccurate or incomplete. Many studies reported that digital tracking can lead to more accurate data collection compared to paper-based methods. For example, at-home measurements of blood pressure and other vital signs have been found to be more accurate than those taken in a hospital or clinic setting. In some cases, apps are even able to accurately predict users’ menstrual cycles and mood changes. In addition, food diaries and activity trackers are often found to be more accurate when tracked within the app compared to using traditional paper-based methods. As the following participant conveyed, digital health may also make it easier for patients to tell the truth about their habits or health concerns:

I like this principle because...I know exactly, that via tablet one would admit things you wouldn’t necessarily tell the doctor or nurse. So, for starters, you can state it in the application. Of course, a conversation shouldn’t be missed afterwards, but this might make it easier for you to overcome yourself. [ 32 ]

However, accuracy can still be an issue in digital health. Different devices can produce different measurements, and some devices may miscount steps, the intensity of workouts, or the quantity and quality of sleep. For example, some women reported devices not tracking their steps while pushing a grocery cart or stroller, whereas others found that their steps were overcounted due to arm movements while they were seated. In addition, some users reported that food tracking options in apps were limited and did not include foods from their culture. Therefore, users may perceive digital health tools as not being representative of their true activity, which may lead them to discontinue the use of the devices. The following participant quote refers to a wrist-worn activity tracker:

Out paddling and we’re huffing and puffing and barely breathing and this isn’t even triggering anything. So it shows [...] that our 150 minute goal is like 60 or half of that. But we’ve actually put in the effort and then you just give up after a while. Like there’s no way I can make this. [ 35 ]

Women often prefer evidence-based health information (eg, explanations of conditions and symptoms and health advice) from a trustworthy source, such as an app curated from up-to-date and evidence-based research, over general internet searches. Users reported that the information provided in some apps was incomplete or inaccurate, with gaps in content or contradictory information that diminished their trustworthiness. In such cases, users may still prefer to talk to a health professional for more trustworthy information. Some women may also find it challenging to trust information that does not disclose sources as they are unsure of its reliability. Devices that are endorsed by, cite, and link to trustworthy health sources are more appealing to users. When sharing results from a web-based survey, the authors of one study reported the following:

Some respondents were specific about from where such advice should come, stating that they wanted expert, credible and up-to-date advice while others noted that they would like to see more Australian-specific or locally-based information in apps or apps that were not linked to the manufacturers of pregnancy or baby products. [ 33 ]

Theme 4: Audience and Adoption

Our fourth theme concerns audience and adoption, which includes two subthemes: (1) demographics and inclusivity and (2) timing and circumstances.

Demographics and Inclusivity

One of the challenges with digital health is to avoid one-size-fits-all interventions and to strive to tailor interventions to address the specific needs of different populations. Digital health that targets specific demographic groups or specific health conditions may increase the adoption of digital tools in those populations. That said, even when targeting people with specific health conditions as the audience, attention must be paid to the language and content in apps and websites. Some researchers noted that women did not want to participate or continue in their study because they did not want to constantly be confronted with their disease. Too much of a focus on disease and ill health can deter women from engaging with the tools, as commented on by some authors:

All but one participant preferred text content that focused on health and physical activity rather than content explicit to cancer. [ 36 ]

The women emphasized that less attention should be paid to chronic disease management and medication as the only treatment option. [...] it was important to explain the implications of the result of the scan and the risk of fractures in a way that will not place the women in a sickness role unnecessarily. [...] The knowledge base of osteoporosis should focus on osteoporosis as a common condition instead of a chronic bone disease. [ 37 ]

Younger women are often more familiar with and more comfortable using digital technology and, therefore, are more likely to use and adhere to a digital health protocol. Users with low technology skills want more training on how to use the digital health tools properly. Little provision is made for those for whom English is not their primary language, which can limit the accessibility and usefulness of digital health interventions. Factors such as language barriers, cultural beliefs, or lack of access to technology may lead to less adoption by some people belonging to ethnic minority groups. The relevance and usefulness of digital health may also vary based on geographic location.

Digital health tools are negatively perceived by some users if not designed to be inclusive of attributes such as body type or gender. For example, users prefer applications that use pictures or models that represent a diverse range of body sizes. Digital health technologies may not be gender inclusive and can conflate sex and gender. It is important to consider the unique health needs and experiences of individuals across the gender spectrum, as several researchers reported:

Participants commented on an exercise demonstration video and recommended that the model should have an “everyday-look” (e.g. plain clothes, jewellery). Also a choice of models of different ages to engage a wider range of patients and help them to relate or identify with the model was proposed. [ 38 ]

[Participant quote]: Maybe the body image it presents...like on a lot of apps, the people doing it looked like they were athletes already. And maybe they should have more people that look normal. [ 39 ]

Two women commented on the gendered design of most FTAs. FTA092 commented that “I chose Clue because it’s the only app that wasn’t pink.” FTA051 also found the gendered design of her previous app insulting; “my last app had a pink flower and was called MyDays or something ...I felt like they were trying to lure me in with this kind of ‘women’s’ approach” (FTA051). She subsequently stopped using that app and downloaded Clue. [ 40 ]

Timing and Circumstances

Individuals are more motivated to use digital health tools during times of illness or when they have a specific health goal in mind. The introduction of technology at the appropriate time impacts the utility and effectiveness of digital health interventions, especially when they are integrated into existing health care systems and routines. Digital health apps need to account for existing medical conditions or medical history to ensure accurate and complete information. For example, technologies that do not provide an option to indicate current pregnancy are perceived as frustrating to users as the in-app goals or notifications can be irrelevant and inconsiderate of their current limitations. In a focus group, one mother shared the following:

I get frustrated with the Garmin [smartwatch] because I wear my watch during the night so it tracks my sleeping as well. Then it gives you like an insight—so a little note will pop up and you know whether your sleep has been really regular or you’ve had irregular sleep. I wish that there was a thing that during pregnancy where that I could put in and say I’m pregnant, because I got those notes that your sleep is really irregular, and I was like, “Because I’m pregnant!” [ 23 ]

Users who are not experiencing symptoms or who perceive their health to be good are less likely to adopt digital health tools as they may not perceive any benefit from using them. Moreover, those who are already tracking their health using other methods (eg, paper-based tracking) are less interested in trying a new digital health tool. Similarly, regarding wearables, some people may already have a wearable and be less interested in having an additional wearable device.

Theme 5: Impact on Community and Health Service

This theme considers the impact of PGHD on community and health service, with three subthemes: (1) communication and community support, (2) clinical integration, and (3) health care provider perspective.

Communication and Community Support

One of the many perceived benefits by users of digital health interventions is the sense of community that these platforms enable. Even though some women reported feeling uncomfortable sharing personal information with strangers in a virtual group, most found that the ability to connect with others who shared similar experiences provided a sense of belonging and support that was motivating and reassuring, as shared by one woman:

What I did love about the apps is the forums. So if you have a weird pain or, you know, you have cramp in your legs at three a.m., you can get on your phone straight away, and you can get support by the women who are going through the same thing. [ 41 ]

Discussion forums and social media platforms associated with digital health interventions are perceived as helpful for connecting with others, sharing personal stories, and receiving support. Digital health interventions can also help women elicit support from friends and family to stay motivated and achieve health goals. For example, researchers who reported on women’s experiences of an app for stress urinary incontinence shared that some participants found it easier to talk to friends about an app for pelvic floor muscle training rather than talk about incontinence [ 24 ]. This can enable increased accountability and further encourage adherence to the intervention. One woman spoke about how her family supported her engagement with a digital health intervention for physical activity maintenance among female cancer survivors:

My husband’s a good motivator. When I say I’m going for a walk, he’ll go with me...with my sister-in-law and her kids, it’s they want to go with me; so it’s how many steps have you got today? Or, are we going to go for a walk. That kind of thing. And with my husband and my daughter it’s, “how many steps did you get today, did you do your workout, let us get it going.” [ 36 ]

In addition to support from family, friends, and community members, these digital platforms can provide an alternative to speaking with a health care provider in person. Asynchronous communication with health care providers is helpful especially for those who may not have easy access to in-person visits or for those who are uncomfortable discussing sensitive information face-to-face. Records of PGHD can also improve the ability to gather and share details with health care providers about symptoms that are difficult to remember during an in-person visit.

Clinical Integration

Women are more willing to participate in digital health interventions if they perceive that they have a direct impact on their clinical care. They appreciate the idea that their health is being monitored and that someone is keeping an eye on their data. Furthermore, women want to see more integration of their clinical test results within their digital health apps and websites. This increases their motivation to adhere to the interventions prescribed through the digital health application.

It was noted that physicians and other health care providers play a crucial role in promoting the use of digital health interventions among patients. As noted in the following participant quote, women enjoy being able to communicate with a health care provider through digital health:

I like it because you can tell the doctor what’s going on and submit it to your doctor, that is the main reason I like it because you can talk directly to your doctor and tell them what is going on without going in or calling. [ 42 ]

Women are more likely to adopt and use technology if it is recommended by their health care providers, family members, or friends. Women reported that digital health interventions were more effective when they were supported by a health care team. For example, having access to a health coach or counselor or receiving feedback from a health care provider on their progress increases their motivation to adhere to the interventions. This support also provides reassurance that they are on the right track toward achieving their health goals. However, some patients become frustrated when they receive conflicting advice from the digital health tool and their health care provider.

Health Care Provider Perspective

Some articles included thoughts from health care providers on digital health tools collecting PGHD [ 20 , 37 , 43 - 55 ]. From the health care provider perspective, digital health can offer several benefits, including the ability to monitor patients’ adherence to treatment and interventions. This can be particularly helpful for patients with chronic conditions that require ongoing management. Providers can use digital health tools to track patients’ progress and identify any potential issues that may require further attention, which can lead to improved clinical outcomes and reduce unnecessary consultations. For instance, one provider learned about their patient’s anxiousness through a mobile health intervention:

I didn’t know my patient was feeling anxious...But when she wrote it down, we could talk about it... [ 43 ]

Some health care providers expressed that digital health tracking could give them a more accurate picture of their patients’ activities and adherence to treatments. In a study about perspectives on a sensor attached to pills that can send data such as date and time of ingestion, a provider commented the following:

A positive would be data and getting a better grip on compliance. (...) I’m making sure the patient is adhering - assuming that the patient is taking everything inside of that blister, you can have confirmation of that. [ 44 ]

In addition, digital health can improve the efficiency of care delivery by providing education and resources directly to patients. This can help patients better understand their condition, treatment options, and self-management strategies, which can lead to better health outcomes.

However, it was also noted that digital health interventions should not replace in-person visits but rather complement them. Some health care providers are concerned about overreliance on digital health tools as well as the potential for misinterpretation of the data they provide. There may be a lack of feedback on the correct use of interventions, such as interpretations of medical advice provided, and health care providers have raised concerns about the safety and trustworthiness of the medical advice generated by the digital health tools. Health care providers especially worry about medico-legal effects of having information from digital health tools taken out of context or without considering the full picture of the user’s history and health, as demonstrated in the following quotes:

As a health care professional, I’m just mindful that if there was a video of me up there talking, if that was taken out of context or shared with another person where that information was not appropriate, that’s a concern to me. [ 45 ]

One anesthesiologist raised, “Who has access to the responses that I provide? Because if a patient receives information from me which they hold onto and is taken out of context, in a medical–legal situation, then that’s a big issue as well.” [ 46 ]

Providers may also find that the abundance of information generated by digital health tools can be overwhelming and time-consuming to manage, adding to an already hectic workflow and blurring professional boundaries. Large volumes of alerts and notifications from digital health tools can be disruptive to health care providers, who expressed the need to set boundaries regarding how and when they engaged with digital health tools. In a study reporting on perspectives about digital health from key informants (health care providers and researchers), one participant shared their thoughts on the potential for digital health to increase workload and liability:

Sometimes the more information that we provide for them (doctors), the more work and liability we give them, right? So if they get so much information that becomes actionable but they are overwhelmed, now they would be obligated to do something with this patient, they are in a chain of distribution, a chain of liability. [ 44 ]

Theme 6: Impact on Health and Behavior

Finally, our sixth theme describes the impact of PGHD on health and health behaviors.

Several studies reported that digital health interventions helped users stay motivated and, in turn, improved their health habits and behaviors, such as adherence to medication, physical activity, and healthy eating. The ability of users to look back at their data helps them identify patterns in their health and behaviors, which increases their awareness of their health and habits. The awareness then allows them to be more mindful of their habits and encourages self-reflection, thus promoting a deeper understanding of their health and well-being. The tracking of patterns in their health, combined with the educational component of some digital health tools, helps users come up with better self-management strategies and feel more confident in their ability to reach their health goals, giving them a greater sense of self-efficacy and control over their health. In a digital health intervention aimed at treating lymphedema following breast cancer treatment, a participant spoke of changes in her awareness of symptoms and improvements:

It helped me realize that I had excess fluid. My arms got lighter each time I did the exercises. My arms began to feel less heavy. It noticed it in my clothes as well. [ 56 ]

Digital health interventions are often reported to positively impact the mental health and well-being of individuals. Women reported improvements in their mood, emotional state, and coping abilities. They also reported a reduction in stress and anxiety levels, which can lead to improvements in overall health outcomes. The digital health tools provide users with a sense of support and accountability as well as feelings of accomplishment when meeting their goals.

However, it is important to note that, while digital health interventions can have many benefits, they may not be suitable for everyone and may even have negative effects on some individuals. For example, some users reported increased anxiety due to excessive monitoring or notifications, and others reported negative effects on their thoughts or worsening of symptoms related to health conditions. Some users found that self-tracking made them more attached to their phones, less likely to engage in social activities, and more isolated overall. Care should be taken to ensure that users do not become obsessive about self-tracking as this can be counterproductive or even harmful. Being hyperfocused on their symptoms or health condition could be distressing and even detrimental to their overall well-being. Therefore, it is important to carefully monitor the use of digital health interventions and adjust them as needed to ensure the best possible outcomes for each individual. One woman spoke about her overreliance on an app used to track breastfeeding:

I stopped using it because um I thought I’m being too anal about this...being too concerned about it, I just need to stress less, and just go with the flow and just be a bit more relaxed about it...so, that’s why I stopped using it completely, and then I think the breastfeeding improved from there ’cause I was worrying about it less. [ 57 ]

Table 2 provides a summary of the thematic analysis grouped into barriers and facilitators. It is worth noting that many things are both a barrier and a facilitator (eg, cost) depending on the individual. In addition, the presence of a specific feature may be a facilitator, whereas the absence of it may be a barrier.

Principal Findings

In this scoping review, we summarized information from 406 articles on digital technologies collecting PGHD and how they have been used in women’s health research. We found a steady increase in articles meeting our inclusion criteria from 2015 to 2020, indicating an increasing trend in the uptake and use of digital health tools in women’s health research before the COVID-19 pandemic. Most included studies (310/406, 76.4%) were feasibility or acceptability studies, effectiveness studies, or reports of digital tool prototypes. Most studies (299/406, 73.6%) focused on tracking conditions related to pregnancy or the postpartum period, cancer survivorship, or menstrual, sexual, and reproductive health. Several types of digital health were represented, with the most common being apps, wearable devices, and websites or patient portals. Through our thematic analysis, we found several considerations of facilitators of and barriers to using digital health tools, including the accessibility and convenience of the tools, visual appearance, device functionality and ability to personalize the user experience, and accuracy of the algorithms and information provided. It is also important to consider the target audience to optimize the adoption of the tools. Engagement with digital health tools may help users improve their health and health-related behaviors and gather support from friends, family, and other digital health users. Women are more likely to use digital health if it is recommended by a health care provider, but there are both benefits and challenges that health care providers may face if considering integrating digital health technology into clinical practice.

A previously published scoping review focused on information and communications technologies as a tool for women’s empowerment [ 59 ]. They reported that the concept of empowerment appeared in various ways with no clear consensus on the definition, with some studies mentioning terms such as self-concept, self-esteem, self-worth, and self-efficacy. Our thematic analysis also found that some women’s use of digital health tools increases their self-efficacy in managing their health. Another systematic review of 13 digital health interventions for midlife women found that many interventions did not use a specific behavior change theory [ 60 ]. Our scoping review did not examine the effectiveness of the interventions described, but those designing digital health tools and interventions may want to carefully consider behavioral theories in the design to increase adoption and retention rates and adherence to interventions.

Overall, digital health technology to collect PGHD has gained popularity over the past several years. The integration of wearables, smartphones, and digital health technologies has enabled the integration of passive data collection. This wealth of data provides valuable insights into various aspects of health, enabling informed decisions and the adoption of proactive measures to improve well-being. The uptake of this technology will usher in a new era in how we manage our health and well-being. This transformation has changed how we engage with our health and shifted our perception of health and the approach we take toward maintaining it.

Femtech, as a subset of digital health technology, has grown in popularity. This was evidenced by the large increase in the number of articles published between 2015 and 2020 that used digital health tools to track metrics during pregnancy and the postpartum period as well as metrics related to menstrual, sexual, and reproductive health. These technologies empower women and people assigned female at birth to take charge of their health. This is particularly relevant for people with conditions that are not diseases or health concerns per se but are nevertheless part of managing their overall health and well-being. In this way, femtech can provide a greater sense of control over reproductive health and choices, which can be precarious in many settings worldwide. However, in a previous scoping review, researchers reported that many mobile health apps do not follow data privacy, sharing, and security standards [ 61 ]. Issues related to the privacy and security of personal health data may be especially important when it comes to tracking reproductive health in settings where sexual and reproductive health rights are not guaranteed. This focus on pregnancy and reproductive health is consistent with the fact that women’s health research has largely focused on reproductive health topics [ 62 ]. Researchers and digital health developers must address gaps in women’s health regarding areas that are not strictly related to reproductive health. Women’s health encompasses much more than obstetrics and gynecology; even for health conditions that affect men and women, there may be sex or gender differences in disease presentation, personal experiences, and treatment plans. While using gendered language and design in femtech has the potential to reinforce stereotypes regarding femininity that could cause harm [ 63 ], there is a need for apps to provide content relevant to female populations while being gender inclusive and conscious of biases in the language and advice presented.

When analyzing themes related to acceptability, personalization emerged as a key aspect influencing the adoption and sustained use of digital health tools. People respond positively and want to engage with tools that cater to their unique needs and preferences. The ability to customize elements such as the frequency of notifications, specific health measures tracked and displayed, goal-setting options, and the amount of health information provided enhanced user engagement and motivation. However, offering too many personalization options might overwhelm users, making apps or devices cumbersome to use and navigate. Simplicity and ease of use should not be compromised in the pursuit of personalization. Creating personalized experiences that are intuitive and user-friendly while integrating multiple functionalities into a given device is an important consideration. Recognizing that a “one-size-fits-all” approach is inadequate, digital intervention designers need to define their target audience clearly. Apps that cater to specific groups, such as those with certain chronic health conditions, may inherently provide a sense of personalization by addressing their unique requirements. We have also learned the importance of ensuring that the design is inclusive and accessible to everyone within the target audience. Our findings that some tools are not sensitive to certain circumstances such as pregnancy are consistent with those of a systematic review of digital health interventions for postpartum women, in which the authors reported that barriers related to postpartum status could make it more difficult to engage with the interventions [ 58 ]. Tools designed with these circumstances in mind may be more engaging for women during pregnancy and the postpartum period, leading to greater adoption and quality of the technologies. Attrition can be high among users of digital health interventions [ 64 , 65 ], but most participants were willing to self-track when motivated by a specific health condition.

An important finding of this review was the growing demand and expectation that PGHD are integrated with clinical care. As digital health continues evolving, patients seek more seamless interactions between digital health data and health care providers. Moreover, services delivered through digital health technologies were not expected to replace the role of health care professionals but rather to be a useful tool to support health care management. Maintaining the human touch during communication for health care delivery was seen as important, with technology complementing clinical care to enhance the overall experience for patients and providers.

One of the critical considerations in clinical integration is the accuracy of PGHD collected from digital health tools. Ensuring the reliability and validity of the data is essential for effective clinical decision-making. Striking a balance between patient empowerment and health care provider oversight is crucial to achieving the best possible outcomes. In general, it is important for health care providers to actively propose digital health during patient visits and encourage its use. While challenges and concerns associated with the use of digital health are noted from health care providers’ perspective, such as concerns about medico-legal effects, maintaining professional boundaries, and not adding an abundance of work, the benefits of these tools in supporting patient care and improving outcomes are perceived as important.

Strengths, Limitations, and Future Directions

There are some limitations to this scoping review. Our inclusion criteria did not cover conference abstracts, conference reviews, editorials, letters, comments, or gray literature. Our review also did not include articles written in languages other than English. Therefore, there may be other uses of PGHD in women’s health that were not captured in this review. The assessments of the quality of included articles, the effectiveness of the interventions, or the accuracy in validating PGHD were outside this review’s scope and were not performed. Our aim was to provide a broad overview of PGHD in published women’s health research literature rather than evaluating the quality of the digital technologies or intervention effectiveness. Another limitation is the rapid growth of digital health and femtech, especially during the COVID-19 pandemic. It is important to note that this scoping review only captures the use of PGHD in women’s health before the emergence of the pandemic. We suggest that this review may provide a baseline for comparison in a future scoping review that captures articles published in March 2020 or later. The strengths of this review include the large number of publications analyzed and the data charting process conducted in duplicate by 2 reviewers. The broad scope of this review also helps provide an overall picture of digital health for women and highlights gaps in the research literature.

Future endeavors in this space should consider digital health tools for women for nonreproductive topics such as chronic health conditions that primarily affect women or conditions that have sex or gender differences in presentation and treatment. Within reproductive health, there was a large focus on pregnancy, but there is an unmet need for research and digital health tools appropriate for women in perimenopause and menopause. A previous literature review found <5 articles published between 2010 and 2020 about digital health technologies that meet the psychosocial needs of women experiencing menopause [ 66 ]. There may also be further opportunities for digital health tools geared toward specific racial or ethnic groups that are culturally sensitive and available in multiple languages. A systematic review found that barriers to the use of digital health among culturally and linguistically diverse populations include lower literacy levels and the use of complex medical terminology in some apps, lack of recognition of cultural concerns, stereotypes, and inaccurate portrayals of cultural groups [ 67 ]. Previous scoping reviews in the space of women’s digital health have identified the need for femtech to pay more attention to cultural appropriateness and consider cultural contexts in their design [ 68 , 69 ].

Conclusions

In conclusion, the integration of wearables, smartphones, and other forms of digital health has revolutionized how we approach and engage with our health. Personalization, inclusivity, and integration with clinical care are vital aspects of developing effective digital health solutions. By understanding the needs of the target audience, providing meaningful personalization, and ensuring data accuracy, digital health can truly transform health care and empower individuals to take charge of their well-being while maintaining a collaborative relationship with health care professionals.

Acknowledgments

Thank you to Shannon Cheng, reference librarian, for her work in developing the search strategy and conducting the database searches. A big thank you to Dr Beth Payne for reviewing the manuscript draft and providing helpful feedback. AT is funded by a Michael Smith Health Research British Columbia Scholar award.

Data Availability

The data sets generated during this study are available in the OSF repository [ 70 ].

Authors' Contributions

JLK and AT conceived the study and designed the study protocol. JLK, RST, and AT conducted the article screening. JLK, RW, and RST conducted the data charting. JLK, RST, and DSC created the visualizations and tables of the charted data. The thematic analysis coding was conducted by JLK and RW, with additional discussions with AT in refining the themes. JLK, RST, and AT wrote the draft of the manuscript. All authors reviewed the manuscript before submission.

Conflicts of Interest

None declared.

PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) checklist.

Full search strategy.

List of included articles by health area.

Metrics collected in the included studies.

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Abbreviations

Edited by T de Azevedo Cardoso; submitted 04.10.23; peer-reviewed by D Liu, M Herron; comments to author 23.02.24; revised version received 15.03.24; accepted 26.03.24; published 16.05.24.

©Jalisa Lynn Karim, Rachel Wan, Rhea S Tabet, Derek S Chiu, Aline Talhouk. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 16.05.2024.

This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on https://www.jmir.org/, as well as this copyright and license information must be included.

Department of Agricultural, Food, and Resource Economics Innovation Lab for Food Security Policy, Research, Capacity and Influence

Effect of Pesticide Use on Crop Production and Food Security in Uganda

May 14, 2024 - Linda Nakato, Umar Kabanda, Pauline Nakitende, Tess Lallemant & Milu Muyanga

The increasing pest proliferation has continued to cause a serious threat to food security in Uganda. This study explores the impact of pesticide adoption on food security in Uganda. Specifically, it seeks to assess whether the use of pesticides ensures food security, with crop productivity serving as an intervening variable. Employing the control function approach with fixed effects estimation on a dataset comprising 1,656 households spanning the periods 2013/2014, 2016/2015, and 2018/19 to 2019/20 obtained from the Uganda National Panel Survey, the study reveals several determinants influencing pesticide use in Uganda. The findings also highlight that the adoption of pesticides demonstrates a positive influence on crop productivity. However, when assessed through indicators such as Food Consumption Score (FCS), Minimum Acceptable Household Food Consumption (MAHFP), and Household Dietary Diversity Score (HDDS) at the pre-harvest stage, the results do not indicate a statistically significant correlation of pesticide use and food security outcomes. Consequently, beyond enhanced crop productivity and the pre-harvest activities focused on in the study, it is imperative to consider the post-harvest application of pesticides to comprehensively explain how pesticide use effects food security in Uganda. Based on the positive link between pesticides and crop productivity, its recommended that government should increase awareness on and access of insecticides among farmers. Given that insects are the main pests damaging crops in Uganda. It is also important for Uganda to reform and reactive a regulatory framework having a licensing system to regulate private local market dealers’ sale of pesticides. Given that the majority of the households purchase their pesticides from private traders in the local/village market. This approach might improve the quality of pesticide purchased by farmers and, increase pesticide use to diversify produce of more nutritious foods, to ultimately enhance access and nutrient intake per meal in Uganda.

 Pesticide use, crop productivity, food security.

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