Tuesday, 27 September 2016

ClinicSpeak & NeuroSpeak: inviting MSers to ECTRIMS

It is essential that we start to invite MSers to attend ECTRIMS #ECTRIMS2016 #MSBlog #ClinicSpeak #NeuroSpeak

"Last week I took flak from suggesting we should allow MSers to attend ECTRIMS so that they can attend scientific sessions, hold their own parallel sessions and submit posters. This is not a new idea and there are several well established precedents in many other disease areas. One critic suggested the ECTRIMS ban was to comply with ABPI, and other, guidelines on how pharma interact with patients. I think this argument sucks; if MSers attended ECTRIMS pharma would have to clean up their act and it may result in Pharma becoming more socially responsible and to stop spending vast sums on marketing their brands. I have commented many times before on how ECTRIMS has become a marketing fest; the marketing warfare that plays out at ECTRIMS each year is like an arms race or in evolutionary terms the 'Red Queen Effect'."

Oct 2, 2013 ... "As this blog had a large number of new readers (>100,000 hits last month) I will take this opportunity to remind you of the red queen effect."

How many MSers can you spot?

"The paper and editorial below in this week's BMJ are very timely and put these arguments into sharp focus. I really think the MS community needs to ask themselves if is there a better way we can do things."


Fiona Godlee. At your next conference ask where the patients are. BMJ 2016;354:i5123


..... It may not feel like it just now, but what we have is doctor centred care. Perhaps also institution, manager, and nurse centred care. What we don’t yet have is patient centred care, despite this being obviously what healthcare should be. But things are slowly shifting in the right direction, and The BMJ aims to help keep up the momentum......

....... An editorial last week summarised where we’ve got to with The BMJ’s patient partnership strategy, and there’s good progress to report. We now have patients as peer reviewers of research articles and contributing to education articles; we require authors to state how patients were involved in their research or in creating an article; and we are publishing a rich array of patients’ commentaries.....

....... It’s now 25 years since the International Aids Conference first included patients in its discussions, but as Larry Chu and colleagues point out, involvement of patients in medical conferences remains the exception rather than the norm.....

....... So, what does doing it well look like, and how can organisers overcome the barriers to patient involvement? With five years’ experience of running a large academic medical conference in which patients play a central part, Chu and colleagues are well placed to advise.... 

..... It’s not enough, though essential, to have patients on the steering and programme committees from the start, they say. Organisers need also to encourage patients to attend, comment, and speak. This means making sure that patient delegates are properly looked after and supported so they can contribute on an equal footing to other participants....

...... This is not window dressing and must not be tokenistic. Crucially, it brings patients “closer to the conversations driving the future of healthcare".


Chu et al. “Nothing about us without us”—patient partnership in medical conferences. BMJ 2016;354:i3883

Key messages: 

  1. Involving patients in medical conferences can help delegates to understand problems that matter most to patients and their caregivers
  2. Involving patients can spark collaborations with patients in healthcare design, education, research, and clinical care improvements
  3. Patient should be included in the creation of conference programmes and selection of speaker
  4. Requirements of attending patients, such as facilities for self care and travel expenses, should be considered when planning conference

..... The expression “nothing about us without us” was first coined by disability rights activists to convey the idea that no policy should be reached without full participation of representatives of all stakeholders. More recently, it has been adopted by patient communities seeking broader involvement with the healthcare system. Although the drive for patient involvement has come from patients, the medical community has much to gain.....

...... Patient involvement in health policy, clinical care, and research has gained momentum in recent years.....

..... Despite this progress, the role of patients in academic medical conferences has been poorly defined, discussed, and implemented.....

What patient involvement can achieve

...... Medical conferences are convened to spark innovation in healthcare by creating networks of experts, sharing knowledge, forming collaborations, and thoughtful challenging of conventional thinking. Patients can make important contributions in all of these areas by helping everyone understand the problems that matter most to patients, caregivers, and their families......

Making it work

...... While most medical conferences that have included patients report modest numbers of patient participants, a few have reported substantial patient inclusion (10% or more of total delegates) and even patient partnership in cocreating programming in their meetings. The degree of involvement, integration, and accommodation made for patients varies greatly.... 

...... Since 2002, patients have been engaged as collaborative partners in the biannual Outcome Measures in Rheumatology (OMERACT) conference. About 10% of participants of OMERACT are patients. Patient partnership was facilitated by strong commitment from the organisational leadership, adequate patient selection criteria, inclusive conference design, and support for patients attending the event. Evaluation shows that involving patients has helped identify new patient reported outcome measures and new domains that are important to patients and provided the patient perspective in developing core and patient reported outcome measures.....

Charters and frameworks for patient involvement
..... Recently, several organisations have created charters or frameworks for patient involvement in medical conferences. Published in May 2015 by a group of 25 individuals, comprised primarily of patients, patient advocates, and people related to the drug industry, the Patients Included charter consists of five clauses that aim to provide conference organisers “with a means of demonstrating that their events are committed to incorporating the experience of patients as experts in living with their condition while ensuring they are neither excluded nor exploited.  The European Patients’ Forum has also recently released a charter on patient empowerment for conference organisers....

Four pillars of patient involvement at academic medical conferences
  1. Accommodation: Consider the medical, nutritional, and accessibility needs and financial assistance with travel and lodging arrangements as practical. For example, include patients in designing a designated physical space such as a wellness room that provides attendees with an area to rest or attend to personal care.38 Use of social media and free live streaming should be explored to allow participation by patients unable to travel
  2. Codesign: Patients should be placed on an equal footing with programme creators to help identify core conference themes, select speakers, and evaluate abstracts that relate to patient centred issues
  3. Engagement: Meaningful numbers of patients should be included in the audience and speaking roles. Patients invited to attend or speak should be able to attend all sessions open to others attending the conference. Patient speakers might be found through local patient advocacy groups, hospital patient and family advisory committees, or targeted social media efforts
  4. Education and mentorship can help patients learn how to collaborate and partner with providers, researchers, and third party stakeholders to fulfil the mission and goals of the conference organiser, hosting society, or institution.
Measuring engagement
..... Use of social media is growing in medical conferences worldwide to disseminate information and spark discussion between delegates. Social media can also be used to study the effect of patient participation on the quantity and quality of discussions at medical conferences—for example, by counting the number of discussions using patient centred words and terms.....


...... Patient involvement in academic medical conferences is an important step to bring patients closer to the conversations driving the future of healthcare. Current data suggest that meaningful patient inclusion can help drive discussion and knowledge dissemination at academic medical conferences and widen research agendas to include new patient centred domains. Conference organisers should work towards patient involvement not only to foster the patient voice in academic medicine but also to realise true partnership and collaboration with patients as a means to drive truly meaningful innovation in health care....


  1. Regarding This is not window dressing and must not be tokenistic. I agree and it must not become a tick box exercise, which I wonder PPI (patient and public involvement) may be heading that way?

  2. YES. Right, the main issue that we have as pharma is to avoid Direct to Consumer advertising, in most of countries outside US, as in the UK ABPI code. But is it going to be hard to get pharma agreement to stop the ECTRIMS marketing warfare... Chu publication give good directions to ensure patients are "neither excluded nor exploited", which is the challenge. But you are very right, patients need a true seat at the table.

  3. Patient Involvement already occurs when nurses are trained in the UK. I am a Servvice User (horrible phrase) and involved in the selection process at three universities and I also give talks to nurses on what it is like to be disabled with a progressive illness. People need to be told what it is like not to have what most people take for granted and do not even think about
    I think it would be a logical step to involve patients in academic medical conferences such as ECTRIMS. This must not be window dressing but a significant step to involve the end user.

  4. I am an MS patient, and I attended ECTRIMS in recent past - yes, you can sneak in. I found the format of this huge meeting to be poorly suited for in-person interactions. Just look at the picture Prof. G posted - it does not matter how many MSers you can spot, both MSes and "legitimate" participants are looking at the huge screen with the slides and video of the presenter. No questions, no discussion... I found that watching the same videos on my computer a bit later works better - at least I can do it in my free time, and I really see the screen. Smaller meetings, or smaller sessions at the large meetings (and I mean MUCH smaller - the ones at ECTRIMS are still too large) would be more useful to MSers, and probably to researchers as well. Even the poster sessions are too large - and too short.
    That being said, forbidding the patients from attending the conferences or charging very steep registration fees has to stop.

  5. The AIDS case study given above is a good one. I find that the MS community is generally far less angry and far more supplicant than it should be. We need to demonstrate and fiercely about what we have lost and what we hope for science to help find again.

    But there are issues with having too many patients attending ECTRIMS. I wholeheartedly call for a representative group - perhaps each Neuro attending is allowed to invite a patient - so that you don't get the bee sting and CCSVI brigade shouting from the backdrop.

    Anger needs to come from our community, yes. But it needs to be informed and credible - otherwise we will become seen as nuisance voices that distract not embolden.

  6. There are times I feel, I must have been misinformed, MS must in fact be contagious the ways HCPs avoid interaction with us

  7. Having attended a few ECTRIMS, I agree it feels odd about the lack of people with MS who are present. Over 9,000 health professionals (including hundreds from pharma), and only a handful of MSers. It seems right for more MSers to attend if this can be arranged.

    However the biggest disappointment I've found is the lack of communication about what goes on at the ECTRIMS congress with the MSer community. There is so much to learn and to be excited about. (*Plug coming*) This year Shift.ms ran 'MS Reporters @ ECTRIMS'

    Shift.ms had six MSers present, interviewing 20 health professionals and researchers at the congress (including Prof G and the mouse doctor) and have released 50 short videos off the back - http://www.shift.ms/msreporters-ectrims-2016

    There certainly seems to be a thirst for this information from the reaction we've had, but we're keen to learn how we can do this better in future.

    Hope to see more of you there in person in 2017!


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