...... This is not window dressing and must not be tokenistic. Crucially, it brings patients “closer to the conversations driving the future of healthcare".
ANALYSIS
Chu et al. “Nothing about us without us”—patient partnership in medical conferences. BMJ 2016;354:i3883
Key messages:
- 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
Excerpts:
..... 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
- 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.
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.....
Conclusion
...... 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....