Mental health problems affect us all, whether directly or indirectly, so everyone needs to care about the availability of good treatments. Similarly, we all stand to benefit from research towards even better treatments for mental illnesses. Whether we know it or not, we already make some contributions to research – indirectly through government programmes or directly by giving money to charities like MQ that are dedicated to funding research.
But what many people do not know is that our involvement doesn’t have to stop there. We can contribute to research in many ways, from using our personal experiences to help shape research priorities, to sharing anonymised health data, to taking part in a study. We all have a role to play in mental health research, and MQ working to help us recognise and fill those roles and get involved in research.
One of the ways we can get involved is by helping to set priorities for the conduct of research studies. There is evidence that involving the public can make studies more effective, efficient and credible. The most consistently reported added value from public involvement is that it helps to increase recruitment to research studies. Public involvement in clinical trials has also helped improve trial design and ensured that the relevant outcome measures are used. For example, a systematic review involving patient perspectives on a particular treatment, found that earlier clinical trials had not fully evaluated the impact of the intervention and missed significant negative outcomes: involving patients in designing those studies would have improved their validity.
The James Lind Alliance has developed a method of running partnerships to systematically collect research priorities from patients, family members, and clinicians. The Lind initiative is uncovering important differences between patient and researcher questions and priorities. Such partnerships have been run for a number of conditions and each project has seen patients working together with carers and clinicians to prioritise research questions.
Research questions emerging from such partnerships include common themes: the need to assess long-term effects of treatments; safety and adverse effects of treatments; effects of complementary and non-prescribed treatments; and the effectiveness and safety of self-care.
A few years ago, a partnership to uncover research questions about schizophrenia was run successfully, and research funders such as the National Institute of Health Research are working towards these priorities for people living with schizophrenia.
MQ, together with a range of other organisations, is currently partnering with the James Lind Alliance on one such priority setting project – “Depression: Asking the Right Questions”. The project is designed to gather patients’, carers’ and clinicians’ unanswered questions about depression. The partners will work together to devise a set of research priorities. The priorities will be promoted to researchers and research funders to help inform the research agenda for the future. We aim to encourage the best research which is most likely to make a real difference to people’s lives.
We want to bridge the gap between the research community and patients. The Depression: Asking the Right Questions project is our first such exercise, but it won’t be our last.
Last updated: 2 June 2016