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Patient powered research?

So in whose hands is the power in health research held? Researchers, or those people who should ultimately benefit from it?

Bella Starling

Public and patient involvement in health research is a growing social movement, chanting to the refrain of ‘no research about us, without us’. INVOLVE, the national advisory group promoting active public involvement in NHS, public health and social care research, defines involvement as an activity that is done ‘with’ or ‘by’ patients or members of the public rather than ‘to’, ‘about’ or ‘for’ them.

It is a sign of real progress in recent years that many people involved in health research no longer see boundaries between patients and professionals who work together in health research, considering them (in the words of Professor Hywel Williams, Director of NIHR’s Health Technology Assessment Programme) “colleagues […] people with good ideas and part of the team, like the statistician or the qualitative researcher or the clinician”. But there are inherent differences in power between those who contribute their lived experience to research and paid research professionals.

Public involvement means better research

“No matter how complicated the science, or how brilliant the researcher, patients and the public always offer unique, invaluable insights,” as the Chief Medical Officer, Dame Sally Davies, is often quoted as saying, almost a decade ago. Since then, we know that public involvement in research can bring real benefits to research, and to people. It has demonstrable positive effects on:

  • Research agendas, by patients working with clinicians and researchers to set relevant research questions, e.g. Priority Setting Partnerships then carried through to funded research.
  • How research is designed and delivered, e.g. by influencing what research outcomes are measured and how, including through crowdsourcing and citizen science approaches that widen how we collect and analyse data.
  • Research ethics, e.g. by improved informed consent processes.
  • People’s sense of themselves and their agency. People report becoming empowered through being involved in research: gaining skills and knowledge, “having a better understanding of [their] health”, increasing confidence, “find[ing] a new way of being”, and “feel[ing] part of the solution rather than the problem”.
  • More diverse research perspectives: researchers describe “having [their] eyes opened to new ways of thinking” and that their research can become “so much richer”.
  • Wider participation in medical research, including clinical trials, by helping to increase recruitment rates.
  • Trust between professionals and wider communities, by fostering productive relationships.
  • Implementation and change, by supporting how research findings can bring about change in health service delivery and policy.

Power, trust, and inequalities

The extent of public involvement in health research is already impressive. But it is by no means mainstream yet. Power in health research remains firmly in the hands of researchers and research organisations. Patient power has been framed as ‘symbolic capital’: something that is dependent on researchers truly recognising and valuing, for example, lived experience of illness, technical and personal knowledge about illness and its treatment, and being the challenging outsider (“asking the stupid questions”). This dependence on validation by researchers means that the value of symbolic capital may be limited - chiming with the view, expressed by many, that public involvement is often tokenistic, serving as a ‘tick box’ exercise.

The expression of power in research viewed through a social justice lens further magnifies inequalities. A recent report commissioned by the Health Research Authority showed that the proportion of people who are confident of being treated with dignity and respect in health research is much lower in lower socioeconomic class and ethnic minority groups than among white and higher socioeconomic class respondents. If we are to shift power relationships in health research, we need to move towards valuing diversity and different forms of cultural and social capital, and work to build mutual trust.

Are power relationships changing?

Anecdotally, some researchers feel that public involvement has ‘gone too far’ and that increasingly, patients have more power than researchers. They can become frustrated through increased demands on their time, forced changes in their research practice, a slower pace of research and loss of power, associated with ‘doing’ involvement. This might be conflated with feelings of vulnerability associated with a general (real, or perceived) anti-expert narrative in science and society.

People like me – so-called public involvement professionals — see ourselves as agents of change within a health research system, and advocates for inclusive research communities. We must navigate these power relationships with care and caution. Without the symbolic capital of public advisors, nor the real power of the researcher, we can be accused of meddling with research, distracting from its pure cause, and developing an unnecessary cottage industry (there are about 200 of us in NIHR). There is also an uncomfortable gender narrative that surrounds the (predominantly female) workforce in public involvement.

Do I do what I do, because I have “failed at science”? Er, no. I may be working towards my own obsolescence within the system, but, until then, I will continue to connect people together in research communities, for the good of research.

And I will do this by evolving the way we do involvement, and hence the way we do research. Currently we invite people into a kingdom where the cultural imperialism of research reigns. Public contributors are slotted into committee rooms with shiny laminate tables, reflecting invisible hierarchies. To become more democratic, we need to acknowledge and nurture our relationships in research, tell our stories differently, and move towards our shared humanity through co-creation or co-production. Empowering more people within research shouldn’t mean a loss of power in those who currently have it (though this is the fear). Rather, more power for all of us, and ultimately research itself.

Here’s a final thought. Some of the power in health research lies in its numbers: the statistical calculations required for a clinical trial to reach significance, the vast numbers of people recruited to research studies globally, how many people become involved in research, etc etc. And perhaps this is also where the future power of public involvement lies. Most health research cannot happen, nor evidence be produced, without lots of people. People – patients, carers, researchers, public involvement nerds like me, knowledge brokers, citizens, young people, I could go on – who want to work together in research, to take part in, support, carry out, question and influence, to hold collective power in our hands. We are legion. We march together. Now, where’s my banner?

Bella is a Wellcome Trust Engagement Fellow and Director of Public Programmes at Manchester University NHS Trust. She is passionate about the democratisation of science; her Fellowship explores how public engagement with scientific research can act as a catalyst for social change.

Author

Bella Starling

Wellcome Trust Engagement Fellow and Director of Public Programmes