What is meant by patient and public involvement in mental health research? I recently found out that organised activists had successfully recruited women with breast cancer to a key study, overcoming the barriers that researchers alone had faced. I know that campaigns are sometimes successful in obtaining access to drugs through NICE. But ‘mental health’ is a label attached to an enormously diverse group of people. There are two issues that trouble me.
Firstly, I’ve always been perplexed that people with mental health problems are lumped together as one interest group. It is often led by people with bipolar disorder, whose experience is to say the least different from that of people with chronic depression, while the stigma attaching to a diagnosis like for instance schizophrenia is of a different order. Within these diagnostic groups, people differ in important ways: ethnicity, age, education, income and gender, all of which have implications for the impact of a mental illness. Most mental health PPI privileges the voice of the educated, middle-aged, White population. As long as PPI is left to the researchers and other established groups, this bias is likely to be perpetuated. In times of hardship the most vulnerable are at the cutting edge – shouldn’t we be prioritising the perspective of the most disadvantaged sectors?
Secondly, I see patients ultimately as the consumers of research. The analogy that I find most apt is that of a customer ‘building’ a house in which to live. The customers know how it should look and feel, they know what they want it to represent for them. They choose a number of features, like the size of the rooms, the location of the front door, the type of roofing material. But they employ professional, architects, planners, builders, electricians and plumbers to build the house. Since I’ve spent decades trying to improve my own research skills, I can’t help but see the lead researchers, interviewers, methodologists, statisticians, health economists and administrators as the professionals in the research enterprise. It is not safe or efficient for most service users to take their places.
Patients should commission research as they would engage with the architect to build a house and control how the budget is spent, but they don’t need to ‘get involved’ in the technicalities. Giving more power to patients means giving them the research commissioning budget. The pressure on researchers from funders to devote more and more of our limited research resources to ‘involving’ service users is a distraction from the fundamental fact that meaningful patient involvement would mean giving service users greater control of how the money is spent – and that would mean the DH yielding some of its power to patients.
Professor Justine Schneider
Professor of Mental Health and Social Care
University of Nottingham