Should patients tell researchers what to do?

I’ve always been uncomfortable with the notion that medical researchers simply hand down their wisdom to grateful and passive recipients – with patients seen as the most grateful and required to be the most passive. It was therefore a pleasure to be able to attend a one-day event in London entitled ‘Should Patients tell Researchers what to do? If so how?’ The meeting was organised jointly by the James Lind Alliance and the Association of Medical Research Charities.

In the UK a greater proportion of medical research is funded by charities than is the case elsewhere, so we here should be in a better position than most to create a culture where patients’ views on research matter. Some of the speakers mentioned important considerations such as the difficulty in allowing for the huge variation in patients’ views, the danger of creating ‘professional laypersons’, the position held by many researchers that patient involvement is fine in theory but too difficult in practice, and the possibility that the views of patients with high-profile diseases could overwhelm input from those with less common conditions. However, the general agreement was that we need to expand patient input, in line with the prevailing view that inclusiveness is desirable in society as a whole.

Speakers at the meeting described encouraging examples where patients have already made key contributions in determining research questions and the design of studies in several medical specialties:
Rheumatology
Asthma
Gastroenterology

Other important initiatives receiving a mention included:
DUETS
INVOLVE
Thinkwell

What I shall remember best from all the presentations is that fatigue was not even considered as an outcome worthy of consideration in research on rheumatoid arthritis, until a patient representative pointed out its importance. A survey subsequently found it was regarded by patients as their most important issue, ahead of pain. Its importance is now recognised internationally by OMERACT (Outcome Measures in Rheumatology).

While the meeting was focused on patient input in the direction and design of research, a related question is how best patients may have access to research output. As we know, most medical research journals are not open access. Furthermore the language of published research makes no concessions to those who lack medical or scientific training.

PLoS Medicine tries to address this problem in two ways. Firstly, of course, everything we publish is open access. Secondly, every research article is accompanied by an Editors’ Summary written in accessible, non-specialist language. We believe these summaries can make a contribution towards improving patient and public involvement.