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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:


Other important initiatives receiving a mention included:

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.

  1. I have DSPS (or DSPD), a circadian rhythm disorder. Since diagnosis, I’ve learned a great deal from online studies of both humans and (other) animals. Although I “lack medical or scientific training”, reading and rereading does lead to steadily improved understanding of the jargon. It took me a good half a year of study to understand PRCs (Phase Response Curves) and now I proudly understand how they are made and how they are applied.

    But our mailing list, “niteowl”, is the most important reading and support. Researchers do NOT know more about our condition and its effects than we do. The occasional sleep doctor and grad student do pop up on the list from time to time. I’m still beaming from the recent comment from one doctor: “You guys are good!”

    Although it may be time-consuming, I think that researchers and doctors could gain a lot from reading and/or participating in such lists. Review articles purporting to show the current state of knowledge about various disorders are commonly published, but they only review other scientific studies. Perhaps review articles based on patients’ mail-lists, questions and observations would be valuable to doctors and researchers.

  2. NBM,

    As the Editor of the DUETs database (Database of Uncertainties about the Effects of Treatments), where we have sought out patients questions on asthma, to identify those questions which do not have an answer (Uncertainties), I would agree that the sources you mention would/could be sources of uncertainties for DUETs and future research. To do this however took months of (paid and unpaid) work of several people. The resources to highlight questions which are unanswered from the sources you mention might be over stretched to do this retrospectively

    I like to think there is something more prospective and proactive which can happen, where patients, carers and bedside clinicians get together and say what outcomes they need/wish to be addressed in future research. That way, the work Paul Chinnock describes such as that with the OMERACT group become more realistic. I would also add that if someone belongs to a charity who fund research, they should be finding out how they prioritise research, does the research need doing (some doesn’t), and what outcomes does it look for and are they recognisable to patients, carers and clinicians. The example of research which measures fatigue is an excellent example of the type of outcomes research should address.

    To need to take six months to work out what an outcome does not seem sustainable to me.

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