Drawing up Research Priorities – different perspectives

One of the most significant aspects of the Five Year Forward View for Mental Health was the Department of Health’s commitment to develop a ten year strategy for mental health research. We at McPin are now working with the Department on the process for drawing up the strategy. The Government’s openness to engaging with the sector and their agreement to our recommendation to involve experts by experience in the process has been encouraging. We will aim to write more about the strategy as it comes together.

Thinking about how we express the principles that we want to see in the strategy led us to a few recent articles that we thought deserved a wider audience. They go to the heart of the tension between focusing on ambitious, potentially game changing, long-term research and addressing questions of more immediate relevance to service users.

Researchers from the Biomedical Research Centre for mental health, (BRC) at the Institute of Psychiatry Psychology and Neuroscience have written in the Journal of Mental Health about how they have engaged service users and carers in setting the priorities for their work. The BRC’s role is to investigate ways of translating the findings of basic science research into improvements in treatments or clinical practice. The authors argue that involving service users in setting their priorities has helped to keep the BRC’s work focused on what matters clinically not what is interesting to academics. Unsurprisingly they found that service users are most interested in innovations that will improve their quality of life and the quality of services they receive, not biomedical breakthroughs. 17 years, the average gap between basic research and clinical impact, is a long-time to wait when you are already living with a serious mental health condition.

Their top priority was improving co-operation between mental and physical health professionals. Other priorities included reducing barriers to early intervention, better management of the side effects of treatments and improved aftercare following treatment. The service users’ priorities did not respect neat academic or professional boundaries. So it is encouraging that the BRC, despite being grounded in the biomedical, explicitly includes the psychosocial in its work.

It is interesting that they explicitly did not involve clinicians in these discussions, recognising that their perspective can often be different to service users. Our own work suggests that involving clinicians on an equal footing with experts by experience raises challenges, both for the professionals and the service users.  However, getting the most rounded view of research priorities requires involving everyone in the therapeutic relationship. This is something we are thinking about further.

A recent editorial in BJPsych draws a neat contrast with the holistic approach of the IOPPN BRC.  A number of former members of the US National Institute of Mental Health (NIMH) National Advisory Mental Health Council have called for a rethink on the US’ priorities.

Currently 85% of NIMH research funding goes on basic and translational neuroscience. Basic research is vital. A better understanding of the brain is needed for new treatments for some conditions. However, as the authors point out, the US ‘Decade of the Brain’ began in 1990 but is still to realise substantial public health benefits. They note that the majority of the long-term decline in deaths from cardiovascular diseases has been due to changes in lifestyle following public health interventions, such as the reduction in smoking, rather than new treatments. In mental health this suggests that we must pay as much attention to the psychosocial roots of mental wellbeing as biomedical investigations. Our view is that we should aim for a balanced portfolio examining the full range of long and short term questions, with service users are at the heart of setting priorities.

So there is an important place for basic science. And an important place for ‘lay’ or service user involvement in it. A recent blog in the BMJ explored the case for patient and public involvement (PPI) even in the most ‘blue sky’ of research. Drawing on the experience of research supported by the Alzheimer’s Society they discuss how engaging ‘lay’ people in research has made a positive impact on designing and disseminating projects. They challenge the perception that the general public are not interested in basic science. The issue is how researchers engage them.

Another angle I might add is that it is easy for ‘professionals’, be they researchers, clinicians or policy wonks to see the ‘lay’ public as a homogeneous, often disengaged, mass. In reality individuals have different levels of interest and expertise. We all wear many hats. Experts by experience are found everywhere, including in research institutions. Good PPI gets its power from capturing that diversity of view.

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