Bridging the gap: building trust between researchers and participants collecting mental health data
This report is a thorough investigation of digital tools and features that support the meaningful interaction of researchers and participants throughout the research lifecycle in large-scale remote or distributed mental health research projects.
The report shares technical, design and governance tools or features needed to scale participatory methods while supporting transparent, reproducible and inclusive science.
The project was developed as a supplemental piece of research to the MindKind study, which has identified trust and trustworthiness as key components of data stewardship models. This report responds to this insight by proposing practical mechanisms with which to establish trustworthy relationships between researchers and participants.
- A literature review of how participatory methods have been used in investigations of youth mental health to date; in what ways technology has been used to manage youth mental health and at what stage in the research cycle; and methodological approaches to integrating participant voice into the design.
- A normative framework to describe the scientific impact of community engagement involvement for different tools.
- A menu of tools, features and journey maps to connect youth and researchers in large-scale data collection infrastructures across the research lifecycle, informed by extensive engagement with researchers and youth with lived experience of depression and anxiety.
- Open questions for further research.
Who this is for
- Researchers from any field relevant to mental health.
- Researchers and technologists looking at data stewardship and data governance in any field including, but not limited to, mental health.
- Lived experience mental health experts.
Building from a set of normative models proposed by Sage Bionetworks and refined through collaborative outreach, youth and researcher advisory groups participated in extensive co-design sessions with the Sage Bionetworks digital and design teams.
Together, the teams described novel tools and features, and extensions of existing platform infrastructure, to support the meaningful interaction of researchers and participants. They developed twelve sets of specifications for tools and features that can be developed and implemented as part of large-scale data collection initiatives.
There are six sets of specifications that enable and encourage transparent, reproducible and inclusive science. These include:
- safeguarding, flagging, aggregation and information sharing
- devices, models and reliable infrastructure
- education about research and ease of navigation
- definitions, support resources and research stages
- global tracker and progress updates
- community guidelines, user profiles and feedback
There are a further six sets of tools or features that actively enable participatory research methods for large-scale, remote/distributed, or secondary user-focused research projects to be done in transparent, reproducible and inclusive ways. These include:
- co-creating and implementing community safeguards, security tracking and a data security explainer
- pizza trackers and status bars to track data across the research process
- expert advice, dedicated areas for feedback and extensions (including public draft of analysis and field notes)
- co-creating definitions and co-creating definition videos extension
- my first research profile
- request a brainstorm
In addition, the report details learnings on how:
- the participatory study design yielded rich detail and amplified the voices and values of youth to be co-equal with researchers
- research initiatives may not necessarily be able to jump from non-participatory research at scale directly to participatory research at scale – research platform hygiene is a critical intermediary stepping stone that lays the groundwork for participatory engagement
- to be truly participatory, research platforms must enable engagement in every stage in the research lifecycle, especially secondary data use
- a breakdown of open questions for further research
Who did this work?
Sage Bionetworks led a consortium of academic partners across India, South Africa, and the UK; the Centre for Mental Health Law & Policy and the Indian Law Society, in India; the Higher Health and Walter Sisulu University in South Africa; the Universities of Cambridge and Oxford in the UK; and the University of Washington in the United States.
The team were supported throughout the project by youth advisors with lived experience of mental health problems, as well as external researchers who commented on the accessibility and usability of the data collected.