Teaching the next generation of global mental health researchers what “involvement” really means
By Grace Ryan, Research Fellow, Centre for Global Mental Health, London School of Hygiene and Tropical Medicine
A few years ago, I was asked to mark an assessment for the Centre for Global Mental Health’s MSc programme that included a section on patient and public involvement. Most of the responses were disappointing, but one really stood out: “Patients will be involved by participating in interviews for the qualitative component of this study.”
I was incredulous. How could we allow a master’s student to complete an entire module on global mental health assuming “involvement in research” meant “involvement as a subject of research”? This wasn’t a failure by the student; it was our failure as educators.
While you would be hard-pressed to find anyone working in global mental health who would say that involvement in research isn’t crucially important, relatively few can speak confidently about patient and public involvement or list more than a couple examples of best practice from the field. In fact, a recent systematic review identified only one example of the involvement of people with lived experience of mental health problems in the conduct of research in a low- or middle-income country. It came from Brazil, a relatively progressive, upper-middle-income country, and people with lived experience weren’t even involved until after the data had already been collected.
Meanwhile, the stakes are getting higher. In May this year, BMJ Open started following the example of The BMJ, making Patient and Public Involvement statements a requirement of all submissions of original research. Most of the big funders in global mental health require the same for their grant applications. And several of the key critiques of last month’s Global Ministerial Mental Health Summit in London centred on issues related to the involvement of people with lived experience, including in research.
In September, we were lucky enough to have Rose Thompson and Johanna Frerichs from the McPin Foundation lead a special seminar on the involvement of people with lived experience for the Centre for Global Mental Health at London School of Hygiene and Tropical Medicine. Rose and Johanna led us through several exercises reflecting on power dynamics in research and strategies to help level the playing field between experts by professional experience and experts by lived experience.
Rose and Johanna’s presentation, which described several common strategies and then mapped them against a continuum of involvement—from consultations and lived experience advisory panels through to co-production and peer research—was a revelation. Several researchers in the room were surprised to realise how much they were already doing to improve involvement in their research. They just hadn’t learned the vocabulary to describe what they were doing or to voice ambitions about what they wanted to do next. For others, the session offered a safe space to speak frankly about shortcomings as well as challenges encountered in the involvement of people with lived experience in their research.
The conversations that Rose and Johanna helped us to start at the Centre for Global Mental Health have by no means finished, but I do believe we are better prepared to tackle this issue in future. This will require changing the status quo not just in terms of our own research as individuals or as a Centre, but also in the field more broadly. An important first step is to ensure that involvement is no longer forgotten from curricula so that the next generation of leaders in global mental health will be better equipped than the last. The McPin Foundation has kindly agreed to help kick-start this process by teaching on our Global Mental Health MSc, but it will be up to us to practice what we preach and set the right example for our students. It’s time to make “nothing about us without us” a reality.