How lived experience expertise shapes research and development in digital mental health
Creators: name: Atkinson, Hannah
name: Trust, The Wellcome
Publisher: name: F1000 Research Limited
Year: 2024

description: About this Report<br>
Wellcome commissioned this review to better understand the involvement of people with lived experience in the development and evaluation of digital mental health technologies, ahead of launching a funding call on scalable digital mental health.<br>
This review draws on document analysis and expert interviews to answer three core research questions:<br>
1.What are the perspectives and priorities for research of people with lived experience on digital mental health technologies?<br>
2.What has been the involvement of people with lived experience in the design and development of digital mental health technologies?<br>
3.What are good practices regarding lived experience involvement in digital mental health technologies?<br>
Supplementary questions included:<br>
• What should researchers and others do to effectively engage and conduct research with people who have lived experience in the digital mental health context?<br>
• From lived experience perspectives, what criteria and requirements should funders expect from researchers wishing to research and develop digital mental health technologies?<br>
This review is specifically focused on the involvement of people with experience of anxiety, depression, and psychosis.<br>
This review is based on:<br>
• a literature review of scholarly literature, encompassing nine prominent databases, which returned 5,434 studies that we narrowed to 50 studies that met our selection criteria;<br>
• a grey literature review, including a search of three grey literature databases and advanced Google searches, resulting in 19 texts that met our selection criteria;<br>
• Interviews with 11 key lived experience experts, across commercial, academic, policy, and advocacy settings.<br>
This review examines the views of people with lived experience on digital mental health technologies, including studies concerned with how those individuals are contributing – and in some cases, leading – research and development of digital mental health technologies.<br>
For the scholarly literature review, we sought to undertake a comprehensive review of studies drawn from a range of different disciplinary backgrounds and experiences. However, the review cannot claim to be exhaustive. For example, time and language limitations prevented a more expansive inquiry to material published in languages other than English.<br>
This review offers valuable research and engagement insights which may ensure digital mental health technologies can improve the lives of those they are meant to assist.<br>
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Defining ‘Lived Experience’ and ‘Digital Mental Health Technologies’<br>
‘People with lived experience’ is a term used throughout this report in line with recent work by the Wellcome Trust, in which ‘lived experience’ is defined as follows:<br>
We understand lived experience as a unique form of knowledge, insight and expertise, that comes from having experience of mental health challenges. When we refer to ‘people with lived experience’ or ‘lived experience experts’, we are referring to people who identify as having experienced anxiety, depression and/or psychosis (broadly defined), either in the past or currently. They do not need to have received a diagnosis (Wellcome Trust, 2023, 2).<br>
We acknowledge that terminology can be contentious in the mental health context, and that different terminology is used globally.<br>
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The term ‘digital mental health technologies’ is defined in this report as:<br>
digital technologies used to assist with diagnosis, prognosis, targeted prevention, treatment, relapse prevention, maintenance of treatment effects, or monitoring of: depression, anxiety and psychosis. The intervention may be standalone or an adjunct to other treatments. The intended location of the tool can be in healthcare, home, school, workplace. The end user of the tool may be the individual or a mental health practitioner.<br>
Lived Experience Perspectives and Priorities<br>
People with lived experience mostly agree that there is a role for digital technologies in providing support and care in the mental health context. Many people are already using digital technologies to support their personal and social needs in ways that improve their mental health.<br>
Although not all studies explicitly asked people with lived experience what they would prioritise in research and development agendas, the following issues were raised repeatedly.<br>
People with lived experience want digital mental health that:<br>
• add to existing face-to-face contact in care and support, rather than replacing it (even as standalone technologies may help);<br>
• are worthy of trust regarding their privacy, data protection, safety, and security;<br>
• can facilitate access to peer support;<br>
• can potentially facilitate social connection;<br>
• promote agency and choice, and humanise those who use them; and<br>
• can be personalised and customised, offering choice in the support options available.<br>
Other notable points:<br>
• Some people prefer technologies that are not presented as mental health specific. This includes supports and solutions which use the language of ‘wellbeing’ and also where cultural framings of distress are integrated;<br>
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• Some people are attracted to monitoring technologies that allow themselves and mental health practitioners to monitor aspects of their lives and improve understanding.<br>
• Others disagree and are averse to monitoring technologies. They are concerned monitoring is intrusive and an affront to dignity and privacy.<br>
This diversity of viewpoints underscores the earlier point about people needing choice about which, if any, technological options are used.<br>
People with lived experience call for an approach to research and design in which engagement is at the heart of planning, design, delivery, evaluation and oversight of the technology.<br>
Involvement of People with Lived Experience<br>
The involvement of people with lived experience in the design and development of digital mental health technologies appears overwhelmingly to have focused on user experience and acceptance of specific technologies. Often this is assessed quantitatively, such as through usage statistics and survey responses.<br>
Only a very small minority of studies in the original search results appear to have involved qualitative research and participatory methods to engage lived experience perspectives.<br>
One of our selection criteria was to exclude research that did not provide ‘rich qualitative insights’ into lived experience viewpoints on digital mental health. For example, user experience and acceptance studies that tested mental health-related apps were generally excluded. This latter material appears to constitute the bulk of literature in digital mental health technology research that involves – in any way – people with lived experience.<br>
This material overwhelmingly offered little or no qualitative insight into the views of people with lived experience on the topic.<br>
Taking a highly conservative estimate, we estimate that only 7% of studies that involve people with lived experience in any way, involved qualitative research to capture lived experience viewpoints. This is a highly conservative estimate, based on the 50 selected papers as a percentage of the 707 papers that we included in the early screening steps because their title or abstract suggested some lived experience input.<br>
These 707 papers in turn, would be a small subset of research on digital mental health technology more broadly. The percentage of studies involving these qualitative insights within the broader literature on digital mental health technology is likely to be much lower. Studies that used methods of ‘co-design’, ‘co-production’, and ‘co-generation’ methods, are likely to be an even smaller percentage still.<br>
Within the studies that were focused on the qualitative views of people with lived experience, the authors used methodologies described as ‘participatory’, ‘community-engaged’, ‘inclusive’, and ‘co-designed’. These papers were often led or co-led by persons with lived experience. Good practices arising from these studies are defined in the next subsection.<br>
Terminology and definitions used to describe different and similar engagement approaches can differ. As we shall discuss, norms of ‘co-design’ and other approaches that promote high levels of engagement or leadership by people with lived experience do not appear to be well established, nor are they always uniformly reported upon with depth, reflection and transparency.<br>
This can mean that two studies that purport to be ‘co-designed’ might have highly variable amounts of lived experience involvement. This lack of clarity can make it hard to identify the level of lived experience involvement in a given study, and it may make it difficult for researchers, new and experienced, to determine what good practice actually looks like.<br>
Studies saw persons with lived experience engaged using varied practices. This included as research participants, as interviewees, as survey respondents, as members on advisory groups, as participants in design workshops, as peer researchers and as lived experience researchers and leaders. Some were included as co-authors in publications and outputs.<br>
Based on the literature and insight analysis, we observe:<br>
•            Imprecise and inconsistent use of language to describe levels of lived experience involvement, and the methods used (for example, the term ‘co-design’ was used in multiple, and sometimes conflicting, ways). This suggests confusion in the field about how lived experience perspectives can guide research, and makes it hard to raise standards in the sector and judge when co-design methods are ‘better’ than others. Community-views and end-user involvement is, as one study proposed, ‘pivotal in shaping the acceptability and safety of interventions’ (Fowler et al., 2023, 2705)<br>
•            Researchers in some cases, do not appear to address power imbalances between researchers and people with lived experience, including imbalances in relation to clinicians and other mental health professionals, but also computer programmers, designers, and similar professionals. Acknowledging power imbalances can help ensure research is ethical and respectful, protecting participants from harm, and allows researchers to implement strategies that minimise the impact of imbalances, thereby enhancing the validity and reliability of the data collected or the commentary offered.<br>
•            Limited efforts to seek a broad or representative sample of people with lived experience. For example, demographic diversity data was not always reported, and research participants were often recruited from those already using the digital platform (which can overlook the hidden denominator of people who do not seek or cannot access digital modes of care). Seeking a broad or representative sample of people with lived experience ensures that the findings of the research can be generalised to the wider population, reduces bias, and improves relevance and appropriateness.<br>
•            Lived experience of research team members or authors was not explicitly designated. Some scholars argue that promoting lived experience leadership in the authorship team is a practice that enhances the research's relevance, integrity, and impact, though the standards and norms for doing so remain somewhat unsettled (Hawke et al., 2022).<br>
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Good Practices in Lived Experience<br>
The review reveals several good practices where digital mental health can be developed and evaluated in a way that is inclusive and respectful of lived experience perspectives and expertise.<br>
Examples included people with lived experience as equal partners in helping define the problem, creating digital mental health content, identifying outcomes of interest, modifying research questions, identifying research sites, assisting researchers in hiring, training, and managing people with lived experience, and assisting with dissemination of findings.<br>
Good practices identified included:

 Research and development is relevant to lived experience needs and preferences: The research agenda or questions were developed with people with lived experience. The research themes were important to people with lived experience, such as getting the right balance in 'blended' support models, ensuring person-centred approaches, and respecting privacy and confidentiality (Hollis et al., 2018; Veldmeijer et al., 2023).
  Engagement with people with lived experience occurs throughout the research and development journey: Lived experience engagement is embedded throughout the research process from shaping early ideas to knowledge translation (eg, Fortuna et al., 2019).
 Reflective practices support adapting and learning in lived experience engagement activity: Projects should include reflective practices to evaluate the role and impact of lived experience throughout the research process, with a focus on continual learning and adaptation (eg, Bennett-Levy et al., 2021; Bond et al., 2023; Buus et al., 2019).
  Lived experience engagement where decision making is clarified and power is transparent: Projects should clarify decision-making power when adopting methods of co-design, co-production, co-generation, and so on. Doing so can clarify to all involved who is responsible and accountable for which decisions and actions, identifying opportunities for lived experience leadership and cocreation, identifying limits or restrictions the project might have, and undertaking efforts to mitigation of challenges surrounding power balance (e.g. Schouten et al., 2022).
 People with lived experience are appropriately supported and remunerated. People with lived experience were appropriately supported and fairly compensated for their involvement in research projects (eg, Gan et al., 2023; Peck et al., 2020).
 Diversity and inclusivity drives lived experience engagement activities: Research sought to acknowledge and incorporate diverse lived experience perspectives to capture a broad spectrum of insights (Bergin et al., 2020; Oguamanam et al., 2023; Ospina-Pinillos et al., 2019; Povey et al., 2016).
 Lived experience activity is reported and acknowledged in knowledge translation: lived experience activities and contributions are shared in outputs and publications, with appropriate acknowledgements and authorships. People with lived experience contribute to broader knowledge translation and greater transparency of lived experience activity in research and development (Fortuna et al., 2019; Fowler et al., 2023).
 Lived experience engagement is systematic, building on appropriate frameworks and models. Arranging research activity within frameworks, standards,  and lived experience models such as action research, peer research and co-design (Fortuna et al., 2019; Ospina-Pinillos et al., 2019; Patrickson et al., 2023; Schouten et al., 2022). Regardless, research and design approaches should involve participants as partners and decision makers and report on collaboration in a systematic and clear manner (Veldmeijer et al., 2023). Reporting frameworks such as GRIPP2, a standardised reporting framework to improve reporting of patient and public involvement in research, may be helpful (Staniszewska et al., 2017).
 Engagement activity builds and empowers leadership and builds capabilities and capacities: Good practices involved encouraging and facilitating leadership roles for people with lived experience within research projects which can empower these individuals and enrich the research with their unique insights (Carr, 2020; Chiauzzi &amp; Newell, 2019; Patrickson et al., 2023; Strauss et al., 2019).

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Is the Digital Context Unique?<br>
Is engaging lived experience in the digital mental health context different from general mental health research?<br>
Similarities with General Mental Health<br>
Some of the main priorities for research do not substantially differ between digital-specific versus mental health research more generally.<br>
The literature we examined generally promotes partnership with and leadership by people with lived experience—a call that is similar to the broader mental health research field.<br>
This call generally involves a push for researchers to pursue phenomenological or priority-setting research in the development of research questions and digital interventions.<br>
Other similarities include calls for services that are safe and effective; tailored to their cultural, economic, and social circumstances; and accommodated for a diversity of lived experiences.<br>
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Unique Aspects of the Digital Context<br>
There are several unique features in the ecosystem of digital mental health technologies.<br>
Compared to wider mental health research there are many new researchers and players in digital mental health research and development. This especially includes innovators in the not-for-profit and commercial sectors. Their approaches can feel very different to mental health research in more academic contexts.<br>
Three other differences standout:<br>
1.           Integration of technology-specific features<br>
In digital mental health, there's a particular interest in exploring and ‘optimising’ technology-specific features like gamification, real-time monitoring, and personalisation. These aspects don't have direct counterparts in non-digital mental health research, requiring new technical expertise and raising different conceptual issues.<br>
For example, how is data given value? Is there an optimal balance between technology that can be adapted by individuals and communities, yet also remains standardised and scalable?<br>
There are also questions about how such technologies are to be governed and who decides where digital approaches should, and should not, be used.<br>
Finally, the question remains open about the appropriate and acceptable role and place of technological solutions compared to face-to-face human connection and support.<br>
2. Concerns over privacy and data protection<br>
While confidentiality is a concern across all mental health research, it takes on new dimensions in the digital realm.<br>
People with lived experience express specific concerns about the privacy and security of their data in the digital context, especially given increasingly complex information ecosystems.<br>
3. Accessibility and digital literacy:<br>
The ‘digital divide’ becomes a significant issue in the context of digital mental health technologies.<br>
People with lived experience point out that research needs to address barriers related to accessibility and digital literacy to ensure that these technologies can benefit everyone, especially underserved populations.