The potential of citizen mental health science
Creators: name: Florescu, Ana
name: Trust, The Wellcome
Publisher: name: F1000 Research Limited
Year: 2024

description: <b>Executive summary</b><br>
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In ‘citizen science’ projects, members of the public take part in creating research through delivering all or part of the scientific process, whether collecting or contributing data, participating in analysis, or formulating research questions and designing research studies. This way of working has potential to support the involvement of a greater number and diversity of people in research, and in turn improve the scale and speed of research and its relevance and benefit to the public. Within the field of mental health science, a ‘citizen mental health science’ could use these advantages to improve understanding of and treatments for mental health conditions.<br>
To better understand the potential of citizen science within the mental health field, we first investigated the current use of this term and existing applications of this approach. We then identified challenges, considerations, and opportunities to support the future development of citizen mental health science.<br>
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<b>Understanding citizen mental health science</b><br>
By looking at examples of self-described ‘citizen science’ projects on mental health topics and understanding the perspectives of citizen science stakeholders within the field, we found that in discourse and practice, citizen mental health science has been interpreted in an immense variety of ways that continue to evolve. However, despite this diversity we were able to distinguish two main types:

 <b>Contributory citizen mental health science</b> interprets citizen science as mass data collection and/or analysis and typically includes projects where researchers initiate and design the research project, while a large number of citizens (usually thousands) contribute to a specific part of the research process, often by collecting, contributing or analysing data.
 <b>Co-created citizen mental health science</b> interprets citizen science as democratisation of science and typically includes projects where citizens work together with researchers to jointly design and carry out research projects; this may involve citizens carrying out several or all steps of the scientific process. Project leadership and the level of collaboration and co-creation can vary significantly across projects (e.g. projects can be led by either researchers or citizens, or by both working in equal partnership).

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<b>Exploring existing projects</b><br>
We found 45 examples of citizen science projects exploring mental health-related questions. Of these, 23 were contributory, 16 were co-created, and 6 fit within both categories. These varied across key project characteristics including:

 <b>Mental health conditions covered.</b> Most projects aimed to answer research questions about mental health in a broad sense to illuminate a range of conditions. Other projects focused more specifically on one or a few specific conditions or experiences, including depression, anxiety, post-traumatic stress disorder, psychosis, suicidality, and substance use.
 <b>Geographic location.</b> Most projects we found involved citizen scientists in Europe and North America. Others were global in scope or took place across multiple sites across continents. We found only three projects set within low- and middle-income countries (LMICs) and also heard from stakeholders that the term 'citizen science' is not often used in many LMIC settings – though there are similar types of research under different labels.
 <b>Digital platforms used. </b>While not all projects used digital platforms to enable their research, some of the more popular types included tools for crowdsourcing data collection or analysis, running research studies, or facilitating online discussion and knowledge sharing. Some projects built custom tools while others used existing social media platforms.
 <b>Citizens’ expertise and lived experience.</b> More projects invited involvement from citizens with lived experience of mental health conditions than from the general public more broadly. Citizens contributed research expertise, subject-matter expertise from different domains, and skills in organisation, advocacy, communication, hypothesis formulation, ideation, and analysis.
 <b>Project duration and engagement frequency. </b>Most projects lasted between a few months to a year, but it is unclear whether this reflects project design or funding constraints. Co-created projects more often involved multiple, regular engagements with citizens across their duration while contributory projects tended to invite one-time or unlimited citizen involvement.

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<b>Challenges to citizen science in mental health research</b><br>
Citizen science in mental health research is currently hindered by challenges including inconsistent use of the term, little differentiation from other data-gathering methods, and overlap with existing collaborative approaches. There is no consistent point of reference for what citizen mental health science is and is not even though they are guided by broad principles established within the wide citizen science community. This presents several risks such as undermining established methodological traditions in mental health research. It also makes it difficult for those interested in the approach to explore distinct applications in mental health research, which further challenges the ability to establish specific, scalable practices. In addition, the lack of mental health specific principle and value frameworks, as well as bespoke ethical standards and governance frameworks tailored to the specific needs of citizen mental health science projects, means that there are significant risks including breaches of privacy and trust. While citizen science has potential in mental health research, its current form lacks the necessary distinctiveness and standards to be broadly useful, requiring further explorations of specific use cases and the development of best practices and governance structures.<br>
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<b>Considerations and opportunities for future development </b><br>
We therefore suggest funders and other citizen mental health science stakeholders account for the following <b>considerations</b> when further developing this space:


 When framing funding calls, be cautious using the term ‘citizen science’ due to its fluid and overlapping scope, and in LMICs its rare usage; instead, clearly specify any desired methodologies, principles or practices, and allow project teams to define how they will approach the research question, including whether citizen science is an appropriate methodology. 
 Provide enough time and funding to support relationship-building, as this is core to developing successful co-created citizen science projects. Funders should also be aware of challenges around digital exclusion that may limit participation diversity and ask projects to consider appropriate mitigation strategies.
 Finally, while safeguarding citizen scientists, especially those with lived experience of mental health challenges is essential, stakeholders should avoid overestimating vulnerability, which could unnecessarily restrict engagement and contributory opportunities.

There are distinct <b>opportunities</b> to enable citizen science to more clearly add value to the existing range of approaches in use within mental health science. These include supporting a variety of projects that address gaps in methods and applications: 


 Co-created projects to achieve greater diversity at scale 
 Citizen science to progress our understanding around social and environmental determinants of mental health
 Large-scale qualitative projects leveraging contributory methods
 Citizen-sourced data analysis projects to utilise subjective judgement and train AI tools
 Contributory projects that involve gathering data from citizens using smartphones
 Citizen-initiated projects by people with lived experience of mental health conditions.

Other opportunities include developing shared principles, standards, and other resources to tackle common barriers:


 Translate and advance data collection instruments for digital affordances
 Develop shared platforms to enable multiple research projects
 Initiate the development of an adaptive, pluralistic ethical framework for citizen-initiated projects
 Establish and promote clear and consistent quality assurance for citizen mental health science
 Create cross-cultural citizen mental health science learning opportunities.

Currently, citizen mental health science lacks precision, to such a degree that it is at risk of being a concept in name but a practice that is undermined by its overlapping application with other research methods. Citizen science has a rich history in scaled data collection and democratisation of the scientific process. Application in mental health needs further development as there are potential benefits, and involved stakeholders are passionate about the approach. Pursuing the directions suggested in this report could help build greater focus, coherence, and momentum in advancing citizen mental health science practice and leveraging it to make progress on core mental health research challenges.    <br>
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Batty, R., Florescu, A., Gulliksen, E., Wong, A., Kamvar, R., Pinfold V., Rennick-Egglestone, S., Slade, M., Todowede, O. The potential of citizen mental health science. London: Wellcome; 2024.<br>
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Corresponding author: Ana Florescu af@science-practice.com