28th March 2019 Blog

Whose idea is it anyway? Using research infrastructure to turn people’s ideas into projects

Lived experience • Mental health services •

McPin’s Deputy Research Director shares his thoughts about the new patient-led research hub in Cambridge.

Dan Robotham

The premise of the Patient Led Research Hub in Cambridge is that patients* often understand their needs better than medical professionals, and are in a position to identify what research they think should be done.

The hub is dedicated to helping patients develop research ideas, which are then assessed for feasibility and matched to researchers who might be interested in taking them forward, in collaboration with the individual or patient organisation.

This provides another way of identifying people’s research priorities, outside of the priority setting partnerships developed through the James Lind Alliance, whose framework we followed to come up with the most pressing unanswered questions for children and young people’s mental health.

To date, much of the hub’s work has focused on kidney disease (for example, patients with Gitelman Syndrome proposing a trial on salt intake), but the hub is open to ideas in other fields.

This is an interesting idea – we know that research driven by people with direct experience of the topic being studied is more likely to have real world value and impact.

Personal experience

In the mental health sector, ‘patient-led research’ or ‘service user-led research’ describes research that has been initiated, designed and carried out by people using their lived experience of the topic being studied.

People with lived experience are involved at every step of the research process, and in some cases they control, direct and manage the research (sometimes referred to as user-controlled research).

The Patient Led Research Hub at Cambridge may not be ceding this level of control to individuals or patient groups but it is still to be commended for seeking out and acting on people’s ideas. It is all the more striking that it is doing this from within a Clinical Trials Unit – places that are not particularly known for being patient-centred.

For me, this is the important thing: the hub is part of the research ‘infrastructure’ resourced by a major funder, the National Institute for Health Research (NIHR).

Anyone who has dipped a toe into clinical and health research funded by the NIHR is likely aware of the large amounts of funding spent on research infrastructure, either in the form of Clinical Research Networks (CRNs), Biomedical Research Centres (BRCs), Applied Research Collaborations (ARCs), Research Design Services (RDS), etc.

However, so far, little of this infrastructure and associated money is dedicated to helping patients develop their own research ideas.

You can tell that these ideas were generated by patients because they relate to everyday life and everyday problems - reducing chronic pain, limiting the side-effects of medication, simply drinking more water to slow kidney cysts.

Well connected

If it succeeds, the Patient Led Research Hub could be a model for other universities and medical institutions interesting in doing more of this. Being integrated into the research infrastructure makes success likely.

For one, being part of Clinical Trials Unit means that it has access to specialists who can help turn a patient idea into a researchable question and project plan. It’s location at Addenbooke’s Hospital, a site so large it feels more like a town than a hospital, connects it to many different patient communities (including people with rare conditions).

Its affiliation with one of the world’s most famous universities means there are a pool of ‘world leading’ clinicians and academics to draw on to co-create new project ideas.

What impressed me most about the hub was how simple it all is. Considering the amount of money the NIHR spends on infrastructure, I’m surprised this approach isn’t already more widespread.

Even at this relatively early stage, you can see patient ideas coming through the hub’s portfolio (especially in kidney research). You can tell that these ideas were generated by patients because they relate to everyday life and everyday problems – reducing chronic pain, limiting the side-effects of medication, simply drinking more water to slow kidney cysts.

These are the sorts of ‘unfashionable’ ideas that are unlikely to generate high-tech partnerships or valuable intellectual property, but they have the potential to actually help people with these conditions. I am interested in following what happens at the hub and seeing what emerges.

* I use the term ‘patients’ because this is more commonly used in a general health context. At the McPin Foundation we tend to use the term service users, or better still, people.

Dan Robotham is Deputy Research Director at McPin.