“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.”
….. 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….
Chu et al. “Nothing about us without us”—patient partnership in medical conferences. BMJ 2016;354:i3883
- Involving patients in medical conferences can help delegates to understand problems that matter most to patients and their caregivers
- Involving patients can spark collaborations with patients in healthcare design, education, research, and clinical care improvements
- Patient should be included in the creation of conference programmes and selection of speaker
- Requirements of attending patients, such as facilities for self care and travel expenses, should be considered when planning conference
…… Patient involvement in health policy, clinical care, and research has gained momentum in recent years…..
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….
- 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
- 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
- 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
- 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.
….. 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….