Going Beyond Informed Consent: The Power of Participatory Research

By Meg Doerr

Depression and anxiety are two of the most common mental health challenges facing youth and young adults around the world. The COVID-19 pandemic has only deepened this crisis: globally, 1 in 4 young people are experiencing clinically elevated depression symptoms, while 1 in 5 are experiencing clinically elevated anxiety symptoms — double of pre-pandemic levels.

It is clear that we must accelerate research efforts to understand, prevent, and treat mental illness in young people. The good news is that our scientific toolbox is broader today than it has ever been thanks to rapid advances in digital technologies that have transformed how researchers conduct their work.

Harnessing digital technologies, we now have unprecedented abilities to collect real-world personal health data at scale, generating huge data sets that can be mined for insight into causes and potential remedies. This vast wellspring of information is already powering research insights that transform disease prevention and treatment across a variety of health domains.

But the digital collection of health data, and how we use it for scientific purposes, is anything but a neutral good. Like any tool, it carries the potential to help or to harm. This is an especially important concern when researchers gather and work with data from populations who have historically experienced harm from scientific and medical communities. It is incumbent on researchers to pursue our work in ways that improve the health of these communities and do not unintentionally create further damage as we seek to learn from the personal health data they can provide.

At Sage Bionetworks, our mission to accelerate the translation of science into medicine is grounded in advancing more collaborative and transparent research practices. We recently had a chance to put our beliefs and expertise into action while leading the MindKind Study, which pushed our collective understanding of the importance of participatory research and the good data governance approaches that support its success.

What is MindKind?

MindKind is a feasibility study, commissioned by the Wellcome Trust, to explore the technical, ethical, and regulatory challenges of collecting, storing, and sharing mental health data provided by youth with lived experience of mental health challenges using their smartphones.

Sage Bionetworks led a multinational team of researchers, clinicians, technologists, and young people from India, South Africa, and the UK to prototype and test how to build a global mental health databank that could house electronically-derived data from youth with a focus on the approaches, treatments, and interventions potentially relevant to anxiety and depression in 16–24 year-olds.

A participatory approach

Sage Bionetworks took a participatory approach to MindKind, bringing young people and adult researchers together as equal colleagues and partners throughout the study. Side by side, we planned the research, overcame obstacles in its rollout, conducted engagement, and analyzed our findings.

Participatory research is sometimes framed as “nothing about us, without us,” a concept brought into the scientific mainstream by disability rights activists. The implications of shifting traditional power hierarchies to include research participants as co-creators of the research process and outcomes go beyond improving the ethics of data collection.

A participatory research approach is absolutely critical to improve the merit of data itself — alongside increasing the efficiency of the scientific process and accelerating discoveries from it. In return, participants have a fair and ethical opportunity to shape and guide how the information they provide is accessed and utilized, while meaningfully contributing as informed citizen scientists to medical progress. In MindKind, youth participants were involved in every stage of exploring the tensions between preserving the privacy of their contributed data and opening that data to the greatest variety of solvers.

Sage Bionetworks has been working on ways to scale and diversify research participation since 2014, initially focusing on eConsent (electronic informed consent) as a method to increase engagement. Our collaboration with the National Institutes of Health (NIH) on the All of Us Research Program was a watershed moment for increasing the accessibility and transparency of informed consent processes through user-centered design. MindKind was a giant step forward for user-centered design in digital health research, placing communities in the driver seat for determining how their data is collected, stored, shared, and used.

Learning from MindKind participants

A key component of the MindKind study design was deliberative democracy sessions. Deliberative democracy is a research method that involves convening groups of “lay” people, educating them about a topic — often complex issues at the intersection of health research and technology — and working through systematic questions to build consensus around the group’s preferences. These meetings of youth participants delved deeply into questions of data governance. The goal of these sessions was to explore youth participants’ feelings and experiences with sharing personal data, with a focus on mental health data and data governance preferences.

In these discussions, young people demonstrated a sophisticated understanding of the costs and benefits of sharing personal mental health data with researchers, balancing personal privacy concerns with the benefits of an open science approach that could help their peers.

We learned from youth participants that how data was handled was less important to them than the trust they had in who would be collecting and sharing the data. Essentially, trustworthy relationships tipped the scales for them towards sharing their data for research purposes.

Takeways

Mental health science — and scientific research into biomedical issues in general — has the potential to improve quality of life for millions of people. But researchers need better tools and better information to help find new ways to support young people struggling with anxiety, depression, and other mental health conditions. Those tools can be significantly improved by taking a participatory approach — and studies like MindKind prove that this is possible.

At Sage Bionetworks, we have deep experience in building cloud-based platforms that enable cross-disciplinary teams to share knowledge and collaborate more effectively when using large-scale biomedical data. Through a project like MindKind, we saw that both researchers and participants can and should contribute to building these systems in a meaningful way.