Between 2020 and 2022, Wellcome Trust carried out a participatory data governance process exploring the governance of data related to mental health.
The process involved youth aged 14 - 24 with lived experience of mental health and informed decision making concerning the design, collection, sharing, analysis, re-use, and use of data by trusted researchers.
The process adopted both individual and collective data governance lenses and involved the following components:
Each country site had a Young People’s Advisory group that met regularly online to orovide feedback on key aspects of the study design and data collection, participate in monthly meetings and asynchronous virtual chats (e.g., via WhatsApp), and participate in small group projects and feedback rounds in between meetings (as needed).
There were 32 participants from a target group of young people aged 16 - 24 with lived experience of mental health challenges (Intentional recruitment).
Each research site recruited a professional youth advisor as a full-time members of the study team. Advisors helped guide decisions and research directions, acted as a link between the country-specific Young People’s Advisory Group (YPAG) and the project teams and led recruitment for their respective YPAG, as well as fascilitating YPAG meetings and synthesizing panel feedback. They provided recommendations to other project teams, and presented their findings regularly at Steering Committee meetings.
There were 3 participants from a target group of 18 - 24 year olds with lived experience of mental health challenges (Intentional recruitment).
A global youth panel was established with participants selected by the academic study team based on past experiences on youth panels and in advocacy groups for mental health issues. Participants were from study countries, and additionally from high and middle income countries (e.g., USA, Canada, Kenya, Nigeria) and met monthly for an hour each time.
The group “provided high-level feedback on project decisions that could inform future testing and rollout of the MindKind study beyond the initial study locations
There were 15 participants from a target group of professional youth advisors and selected members of national MindKind young people's advisory groups (Intentional recruitment).
Because of regulatory delays in being able to recruit young people to the planned Young People’s Advisory Groups, an ad hoc International Youth Panel was convened by one of the project partners, the University of Washington. Young people who participated in the International Youth Panel were not members of the in-country or global Young People’s Advisory Groups. This panel provided early input into the work to identify ‘Active Ingredients’ of mental health, explore data modalities, and map data governance models and data collection strategies.
Participants were recruited through the networks of the MindKind study team.
The Data Use Advisory Group was made up of researchers from seven countries (Australia, Brazil, India, Nigeria, South Africa, United Kingdom, and United States) and met 2-4 times per year, as well as taking part in ad-hoc engagement surveys or e-mail follow-up.
The groups role was to provide insight on the scientific uses for a global mental health databank and to discuss issues of research ethics, governance models, data storage and accessibility, data use agreements, and researcher qualifications.
There were 18 participants from a target group of researchers with a background in open science and data sharing and/or adolescent mental health research, social-medical sciences or clinical practice (Intentional recruitment).
Participants were recruited through the networks of the study team.
Participants were recruited in India, South Africa and the UK to download and use the MindKind app for recording information about their mental health and behaviours.
They were randomly assigned to one of four ‘governance’ conditions, the first of which (Group A) asked about participant detailed preference questions on how data should be governed, and the remaining three (Groups B, C, D) addressed the acceptability of different data governance models.
- “Research norm (Group B): This option presents current researcher community norms for data use, whereby researchers will be able to download a copy of the data from the databank following strict data security rules. Data may be used, unrestricted, by both commercial and non-commercial researchers.
- Youth informed democracy with download (Group C): Study participants will vote as described in the Democracy Choice above. Under this model, researchers are allowed to download a copy of the data.
- Youth informed democracy without download (Group D): Study participants will vote as described in the Democracy Choice above. Under this data governance model, data may only be accessed via a restricted server.”1
Researchers also gave some participants a choice over the order in which the app would ask data collection questions, whereas an alternative group of participants were not given these choices.
Researchers tracked levels of engagement with the app, and how long participants continued to engage with the study, based on the choice of data governance model.
There were 300 participants from a target group of young people with at least 10% having lived experience of mental health challenges (Open).
Participants were recruited through social media and outreach, including to intersectional organisations and existing youth organisations.
The project carried out two rounds of deliberative democracy sessions in each country. The first round involved cohorts of five to seven participants all from the same country, provided with background materials, and invited to discuss different data governance models and to explore concerns and hopes around data governance for a global mental health databank. The second round involved cohorts of 6 - 8 participants, drawing on participants from the previous cohort, but now combining participants across countries, and holding two 60-minute sessions, seeking to build on prior learning and explore similarities and differences between countries. The study protocol outlines that:
“Deliberative democracy is a distinct qualitative research approach, differing from focus groups by the purposeful provision of educational intervention to enrich group discussion. Further, there is an emphasis on discussion leading to iterative revision of opinions as participants integrate new information and others’ perspectives.” The protocol also reports that: “The quality of deliberative democracy sessions will be evaluated using criteria proposed by DeVries et al., 2010 37 , including equal participation of all participants, respect for the opinions of others, willingness to adopt a social (rather than individualistic) perspective, and reasoned justification for one’s positions. These data will be gathered by the research team participant exit surveys.”
There were 150 participants from a target group of youth aged 16 - 24 with a mix of those participating in the MindKind study and those not (Intentional recruitment).
Participants were recruited through snowball sampling through existing contacts plus social media recruitment, with a goal of producing a representative sample.
Background information was given through video presentations (online or in-person).
Written, audio and video materials were provided in advance, and participants given an opportunity to ask questions of the research team. These were carefully designed to be accessible to participants (see final report page 112), including using a video script voiced by local youth advisors to be more accessible to young people at each research site. An interactive concept map was also prepared and shared with participants.