What is the evidence that public partners make a difference when setting research priorities?

How did we miss the elephant in the room? #MSBlog #MSResearch

"Last week I got a lot of behind the scenes stick for taking the MS Society to task for delegating the setting of research priorities to the James Lind Alliance (JLA). It was particularly galling when research into MS causation did not make it into the top 10, when clearly this is the most important and pressing issue in MS; it's the elephant in the room. I would like to thank many of you who took the time to comment on my post for your support."

"The article below is very timely and explains a lot about the JLA process and why the results confound common sense. I note the JLA  excludes the pharmaceutical industry and pure researchers. Why? If they had included Pharma I am sure a half , or maybe three-quarters, of the top 10 priorities would have moved off the MS Society's list and on to a Pharma list. Put bluntly the MS Society does not have the resources to develop drugs. All it can do is fund small proof-of-concept studies, lobby Pharma and support academics in lobbying Pharma, to develop drugs for MS and helping get its members behind treatment paradigms and strategies."

"I feel sorry for pure researchers. The fact that the JLA excludes pure researchers means that the days of blue sky basic science research in specialist fields are over. Blue sky research today has always been  the economic engine of tomorrow. What MS research needs is cross-disciplinary researchers and some out-of-the-box thinking. Sitting in a room with a lot of other people who are researching MS, or who have MS, is not the way forward. We need to sit in the room with immunologists, microbiologists, virologists, molecular biologists, system biologists, IT superstars, medical physicists, medical sociologists, psychologists, heath economists, etc."

"It is interesting that the article below states that the JLA process results in 'patients' pushing for research into causes. This is clearly not the case with regard to the top 10 MS research priorities."

"Has the JLA given us a camel? How did the process miss the elephant in the room?"

If you simply focus on the white swans you won't see the black ones!

Sophie Petit-Zeman & Louise Locock. Health care: Bring on the evidence. Nature 11 September 2013

Excerpts:


.... Involving patients and the public as partners in medical research - from deciding what to study to influencing how results are used - is an emerging force. For some, the approach is based on common sense and justice. Others, such as the chief medical officer for England, Sally Davies, feel that the advice of patients and the public “invariably makes studies more effective, more credible and often more cost efficient”....

..... PPI is a prerequisite for much UK government research funding and it is spreading among funders, health-care organizations and charities. The James Lind Alliance (JLA).... enables patients, carers and clinicians to agree on what research matters most. It explicitly excludes the pharmaceutical industry and pure researchers ...... 

...... This international growth of PPI is rightly paralleled by unease at the paucity of evidence for its impact.....

...... And the evidence there is, including the findings that PPI improves recruitment to studies and changes what is researched is weak. As Simon Denegri, the United Kingdom's first national director for public participation and engagement in research, put it: “The evidence-base for PPI's impact is meagre, patchy and largely observational.”.....

..... A key element of reporting PPI is to make clear who was involved, in part to allow us to gauge when it matters to distinguish between public and patient input......

...... We must also probe whether PPI is valuable for all research types. Will it ever, for example, have a place in basic science? Anecdotal evidence suggests that it might, in part because patients push for research into causes. The UK Alzheimer's Society, the only funder that works with people with dementia and their carers to select research projects, backs work from the lab bench to the clinic. And priorities in sight-loss research, identified through the JLA approach, revealed patient interest in causation, as well as treatments using stem cells and gene therapy......

...... One of the knottiest problems in PPI is how to best weigh up anecdotes and evidence. How are the patients involved chosen? Do they bring more than their own views? Are diverse voices heard, or just those that are loudest? ....... Ignore such questions, and PPI might unwittingly perpetuate power imbalances...... 

...... The most well-meaning approaches can simply extend input from educated, middle-class professionals to input from educated, middle-class patients....... 

....... Yet we must also avoid double standards. Just as people will always want the best researchers or clinicians, we must not exclude the most informed or articulate patients........

Other posts to read:

12 Sep 2013
Ignore the black swan at your members peril. #MSBlog #MSResearch "I received the email below from the MS Society. You may find the research priorities interesting, or not! My one criticism is the priorities make no mention ...
12 Sep 2013
The James Lind Alliance (JLA) is a non-profit making initiative which was established in 2004. It brings patients, carers and clinicians together to identify and prioritise the TOP 10 uncertainties, or 'unanswered questions', ...

Labels: , ,