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!


…. 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’, 

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.


  • It's great to be able to put questions to neuros and researchers at ECTRIMS, but I would love to be able to ask big Pharma some questions eg Teva- are they doing any trials for using laquinimod as an add on treatment. If so, is it only as an add on to Copaxone (one of their drugs)? Would they be interested in a trial as an add on to alemtuzumab (a Biogen drug) or would they refuse? I don't expect they'd be willing in case all the got is big Pharma/big profits bad or all drugs are poison a la Dr. Dre.

    • You have just asked the question as Teva will be reading….The question is will they answer?

      To answer your question it will be economics at the end of the day the accountants will decide what to do.

  • "I feel sorry for pure researchers."

    I sometimes don't think you understand how let down those of us with MS feel. There's a massive MS industry (neuros, pharma, researchers, mice, conferences, grants, back-handers etc. etc.) which gets bigger each year. I bet there's more researchers / neuros / pharma representatives at ECTRIMS 2013 than ever before. It must be nice to catch up with old mates, take the freebies offered by the big pharma companies, do the city tour, and attend the neuros dinner / dance or bowling competition. For those with SPMS or PPMS sitting at home in their wheelchair or attending the local MS society meeting, the reality is quite different. Where's the neuro-protective treatments, the drugs to help recover functions (wasn't that the aim of Promise 2010?). MS research is the most engineered, gravy-train industry I have come across. Corrupting Churchill's phrase – "so little achieved by so many". Wht would any neuro / researcher want to find the cause of MS? There is a risk that it could be treatable. No more mega profits for pharma, no more grants for MS researchers locked in a lab killing mice, no more trips to interesting places to attend the numerous conferences, not more consultancy fees to supplement consultant salaries. Research is an animal and it's instinct is to survive and expand. Go forth an mulitply! I look at the names attending ECTRIMS 2013 and see the same old Professors who've been doign this stuff for 40-50 years. No one will bite the hand that feeds them, so no one will identify the cause of MS. Much better to do another study comparing copaxone with rebif, or injecting poison into a mouse's brain and recording the response. Research was my hope for a better future. I now realise that the the link between research and the wellbeing / recovery of MS patients is almost non-existent.

    • Anon 10:19

      You have obviously not been following the blog and Team Gs work on vitamin D, smoking, EBV and the MS endophenotype, nor their posts on the Charcot Project and other anti-viral strategies in MS. You should get your facts straight before shooting from the hip.

    • Anon 10:47 thanks for your support. You sound like you work in our group. If Anon 10:47 could see my ECTRIMS schedule they would realise that it is definitely not a party and at the heart of all our current research activities is progressive MS (The PROXIMUS and SMART studies are extensions of PROMISE 2010) and we are involved in 2 commercial PPMS and 2 commercial SPMS trials. And there is more to come. Being a killjoy must be depressing.

    • There will be abetter fiture but unless you can change the process you must realise that progress is slow and the are numerous post on the blog that explain thiz.

    • I'm a big fan of Team G and all the work you do. I think Anon 10.19 was OTT. I don't really follow MS research events such as ECTRIMS. I just visited the welcome page of the ECTRIMS 2013 website, Two things struck me:

      "In 1996, approximately 700 participants attended the 12th ECTRIMS congress in Copenhagen and this year we expect almost 10 times as many people." and

      "Copenhagen has several Michelin starred restaurants, including “Noma” appointed as the world best restaurant 3 years in a row, and “Geranium” with the highest ranking chef in the world."

      While the comments by Anon 10.19 look like the rantings of a mad man (or woman), I was surprised that this was the 29th congress. Yet we don't know the cause/s of MS or how to treat progressive forms. There is a sense from the website of a bit of a jamboree with a research event attached. I look forward to hearing what comes out of the congress. But Anon 10.19 raises some genuine points which have made me think. There seems to be a lot of sponsored session demonstrating again that this is big money for drugs companies. I wonder if the ECTRIMS conference will be around in another 29 years – I hope not!

    • Prof G,

      "If Anon 10:47 could see my ECTRIMS schedule they would realise that it is definitely not a party".

      Am I right in assuming that you get paid for the sessions you run ECTRIMS for pharma companies? I see you are running sessions for Biogen and Genzyme? The reciept of payments / consulting fees make me less sympathetic to the busy schedule claim!

  • Anon 10.19
    " Research was my hope for a better future. I now realise that the the link between research and the wellbeing / recovery of MS patients is almost non-existent."

    You are completely mistaken in your assertion. We shall carry on trying to improve the situation, despite the carping naysaying of posters like you (who thankfully appear to be in the minority).
    That said, I hope the opportunity to vent was helpful for you.

  • I think this post (and the previous one) completely misses the point. The #2 priority was 'How can MS be prevented?' – any researcher should be able to put together an application regarding cause which shows how it can address this issue. By leaving it open at prevention it specifically leaves the way for the black swan theory – ANY ideas can be submitted under this priority.

    It would be much worse if the top 10 was filled with current pet theories around cause, restricting funding to the current ideologies and ruling out the potential black swan.

  • I truly believed 35years ago, that some clever scientist would find the cause of MS. My GP at the time said he'd been waiting 40 years for the cure. This blog is typical of the attitude towards research for the prevention of the next generation being struck down with this disease. I've seen it with other groups that only want improvements that will help them or their disease. Maybe I am a freak, but I've not been chasing the cure. I know I'm not going to get better, but I'll do everything I can possibly do, to make me healthier.

  • I really think that someone from the MS Society did a guest post to try and explain this. There are a lot of disgruntled researchers out there!

  • As a person with MS, I occasionally read this blog in search for competent presentation of MS-related news. Of course, I would love to see the cure for MS discovered! As a (non-medical) researcher, I understand, however, that this is easier said than done: research breakthroughs cannot be planned, they happen (or don't happen) on their own schedule, as a result of very hard work, ingenuity, and luck. Real research addresses fundamental problems, and it may or may not offer immediate solutions to practical problems (which, however, cannot be solved without fundamental understanding of the issues involved).
    I am convinced that research priorities cannot be set by the committees – let alone committees of non-experts. The list of "10 research priorities" reads like a list of important clinical objectives. Good research is always about "why"'s; identifying most critical questions to ask cannot be outsources to the public. In defense of "MS researchers" who presumably have vested interest in stagnating the field in order to preserve their jobs and their perks: I do not personally know any "MS researcher", but I am sure they are not too different from numerous researchers in other fields I do know. In my field, and I suspect even more so in medically related fields, nobody in their right mind goes into research to make money: there are dozens of more lucrative careers, and research is not one of them. People become researchers because they can't live without it! Solving research problems is addictive (much more so than reading detective stories, of playing computer games, or solving puzzles – to name a few somewhat related activities). Doing research means working 24-7, thinking non-stop about your work, and in 99% cases, facing failure after failure (most experiments do not work the way you anticipate). The intellectual satisfaction of 1% of successful experiments more than compensates for the seeming misery of the picture described above. Knowing researchers' mentality, I can't believe that "MS researchers" are setting themselves up for a failure just to stay in the field longer. This is not how science works! Also, even though I am not an expert, I am sure any good researcher working in the field of MS is broadly trained in a fundamental area of science that will not die if MS cure is all of a sudden found. "MS researchers" can be neuroscientists, physiologists, immunologists, molecular biologists, etc. etc. etc. If MS problem is solved, they can seamlessly move into other fields (for example, an immunologist can start working on cancer vaccines – I am making it up, I am not an expert, but the point is there are more than enough problems in this world to address and to work on, no "MS researcher" will be left with nothing interesting to do). Progress in science is sometimes long and incremental, but revolutions also happen. Unfortunately, we cannot predict them – but they certainly cannot happen without incremental progress resulting from day-to-day efforts of dedicated researchers.

  • And going to the meetings is not about attending good restaurants (although you do have to eat even at the meetings – the problem of sustaining human life without food for extended periods of time is not solved yet!). Meetings are always insanely busy, participants are hungry for information and run from room to room, trying to learn as much as possible from all the talks. Meetings are also great for exchange of ideas and just discussing science with others – although huge events like ECTRIMS may be less suited for productive conversations than smaller, more quiet gatherings (Gordon Conferences are great in my field – I am not sure what works best in the field of MS-related research).
    As an MS patient, I am eagerly awaiting a cure or at least a reliable long-term treatment for this disease (which threatens to deprive me of joys and frustrations of being involved in research). I truly believe the best way to make progress is to trust researchers to set priorities and to do their work – this is what they are trained to do, and this is what they decided to dedicate their lives to accomplish. Their efforts should be admired (and, of course, funded – essentially none of this funding ends up in their personal pockets!)

By Prof G



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