In this guest blog, Alison Cranage discusses the importance of giving people with depression a voice in the research process and determining the priorities for it.
Depression affects 1 in 10 adults in any year, and can have debilitating consequences. We know that research can improve lives and improve diagnosis, treatments, care and prevention. But who decides what to research? What would make the most difference to people’s lives? What are the important issues?
Fundamental research into the causes of depression can shed insight to what is happening the in brain during the condition. Clinical trials can test new and better treatments. Social research can improve access and availability of treatments and support. But with limited resources, who decides what is the most important?
At MQ: Transforming Mental Health, we feel it is important to ask those directly affected. So we have joined with the James Lind Alliance (JLA) and a range of other organisations to do just that. Together, we are running a national survey to give those affected by depression a voice in the research process. It’s asking for people to submit their questions about depression, which will be used to generate lists of research priorities. It’s a great opportunity for people affected by depression to get involved in setting the research agenda.
The JLA works with patients, carers and healthcare professionals to generate research priorities. Such partnerships have been run for numerous other health conditions – with interesting results. 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. These priorities are often mismatched with those being assessed by researchers.
We don’t yet know what the research priorities for depression will be, but once we have them they will be shared with researchers and research funders, be they government, universities or charities. The aim is not to replace work that is being done - researchers have vital insight into their fields of work, and we should not attempt to replace that. Rather, we want to give researchers the chance to connect with people their work can affect – something that rarely happens.
By finding out what is important to people, we can help researchers plan more relevant studies. We can help research funders to better direct their resources. The ultimate benefit is the development of research which is more likely to make a real difference to people’s lives.
Take part and submit your questions about depression at www.depressionarq.org
Alison Cranage is project manager of Depression: ARQ
MQ: Transforming Mental Health is a new UK-based charity focused on identifying and funding research key to solving global issues in mental health. To find out more see www.joinmq.org