Patients have their say on research priorities

Abstract

“Chronic fatigue syndrome researchers face death threats from militants”—the depressing headline of a recent investigation by the Observer newspaper in the UK. The campaign of intimidation and threats against scientists by a minority of activists who claim that researchers suppressed evidence that chronic fatigue syndrome has a viral cause is extreme, shocking, and vanishingly rare. But, atypical as such a case clearly is, it serves as a reminder of the sometimes complicated relationship between patients and the researchers who seek to better understand and treat their diseases. Perhaps one of the most jarring aspects of the chronic fatigue syndrome militancy is that the picture of confl ict between patients and researchers that the extremists’ actions paint is so at odds with the increasingly close and fruitful relationships being established between many patient groups and research groups. Traditionally, setting priorities for research has been the province of clinicians and academics, but there has been an increasing realisation that the public should be more involved in decisions about what is researched and how that research is designed and undertaken. Chris Polman directs the Multiple Sclerosis Center at the VU Medical Center in Amsterdam and advises several research foundations, including the Dutch MS foundation, Reuma, and the Arthritis Foundation, and has been involved in designing trials for multiple sclerosis treatments since they fi rst became available in the 1980s. He told The Lancet Neurology that “it’s critically important that patients and patient groups are involved in decisions on trials, especially in indicating what’s important to them and what’s not so important”. INVOLVE is a UK-based advisory organisation funded by the National Institute for Health Research and founded on the belief that “research which refl ects the needs and views of the public is more likely to produce results that can be used to improve practice in health and social care”. Sarah Buckland has been at the organisation since its inception in 1996. Now Director, Buckland says she has seen a huge change in attitudes towards public involvement in research. “Back when INVOLVE fi rst started there was a lot of reticence