What are the best ways to involve patients in developing core outcome sets; experiences and reflections of the HOME initiative

Transcription

1 What are the best ways to involve patients in developing core outcome sets; experiences and reflections of the HOME initiative Joanne R Chalmers, Laura Howell, Kim Thomas, Rosemary Humphreys, Deborah Hall, Carron Layfield, Barbara Maston, Jim Blackwell, Margaret Shelton, Fiona Cowdell, Eric Simpson, Jochen Schmitt, Phyllis Spuls, Hywel Williams

2 HOME Core outcome set for eczema (trials and routine practice) 323 registered members International Patients, clinicians, methodologists, pharma Evidence-based process, best practice HOME roadmap COMET /COSMIN/ CSG-COUSIN

3 HOME Progress so far Core domains Agreed on 4 core domains for all trials Measurement instruments: 1. Clinical signs measurement instrument recommended 2. Patient-reported symptoms measurement instrument recommended 3. Long-term control - partly agreed 4. QoL - no suitable instrument identified

4 A word on terminology Adults with eczema Parents of children with eczema Eczema patient support group representatives patients

5 At all stages Patients in HOME edelphi to prioritise domains Consensus meetings Members of working groups systematic reviews, qualitative studies Membership surveys Developing materials e.g. glossary of terms

6 Question: Does our consensus meetings provide the opportunity for patients to give meaningful input into the COS development process?

7 Study design Patients attending HOME V consensus meeting (France, June18) Semi-structured interviews Conducted by Laura Howells PhD student, independent of meeting organisers Recorded, transcribed and analysed thematically Workshop held in Nottm to generate ideas Patients and researchers Two COS (eczema and tinnitus) Protocol publicly available

8 Results 11/13 participants interviewed Most via telephone / video call Included regular (majority) and first time attendees Largely positive experiences, but highlighted where could improve

9 1 Perceived benefits of attending HOME 2 Group identities: Sense of belonging 1A Benefits to the HOME mission 3 Health at the meeting 1B Benefits beyond HOME 2A Sense of belonging to the whole group Factors that affected how patients perceived their involvement in the HOME V meeting 2B Sense of belonging to the patient group 4 Perceptions of roles at the meeting 3A Health affects participation 3B Accommodation of needs 4A Bringing personal experiences 4B Representing others 4C beyond my role? Leave it to the experts 5 Navigating the world of core outcome sets 5A Expectations 5B Accessibility of information presented 5C the impact of structure

10 General principles Ensure patients are welcomed Responsibility of all other stakeholders Ensure patients are supported Buddy system Contact person for practical requirements Unfamiliar environment for some patients Fast-paced allow for this

11 What do they want from me? Expectations Testimonials from patients describing what to expect "I was feeling a little nervous about meeting so many eczema experts from all around the world, and worried that I wouldn t be able to follow what they said. But the other delegates soon put me at ease: the researchers asked us patients plenty of questions and very much treated us as equals." Terms of reference Sharing experiences Individual lived experience is ok no right or wrong Not looking for a single patient opinion Share topics for discussion with patient support group reps beforehand to get opinions from their members

12 Pre-meeting reading Happy to receive and put in time to read beforehand Send hard copies At least 2 weeks prior to meeting Give guidance on where to focus Lay summaries (+ patient input). Consider different formats Provide contact for any questions

13 Meeting arrangements Medical needs of patients Ensure special requirements known and catered for Eczema = private area and time to attend to apply treatments Venue Appropriate for those with the medical condition under discussion? Consider room layout - lecture theatre style more formal Clear signage Convenience is key e.g. minimise travel between venue and dinner

14 Patient pre-meeting Held 10:00-12:00 (main meeting started 1pm) Informal layout (horseshoe) Aims of pre-meeting to understand: Why COS/HOME needed What are COS (use analogies) Why important to have patients at meeting Aims of the main meeting Research to be presented at main meeting Tasks to be carried out at main meeting And get to know each other

15 Patient pre-meeting Welcomed and highly valued (all attended) Allow time / setting between pre and main meeting Involve patients in the planning and delivery Ensure plenty of opportunity (and informal environment) for questions and getting to know each other

16 Conduct of the meeting Brief all facilitators/chairs to ensure they invite and encourage patients to express opinion During opening talk: Welcome and thank patients for attending Remind all participants to respect all points of view, the value and equality of ALL stakeholders

17 Structure of the meeting: whole group Harder to input Other ways of inputting e.g. suggestion box/wall, online chat Factor in time out/place for patients to reflect on ongoing discussions as a group Assign a feedback person for joint comment BUT keep separation minimal

18 Structure of the meeting small groups Better for interaction and sharing opinions than whole group discussions Mix of stakeholders in each group (prearrange)

19 Conduct of the meeting Jargon (particularly whole group discussions) Using unexplained technical language(individual terms or whole discussion) is unacceptable Glossary of terms Jargon monitor(s) / sign explain use to the whole group at the start

20 Summary Generally positive experiences Make efforts to fully accommodate needs of patients not normal working environment Remember to show patients that you truly value their contribution I really feel at home when I go to HOME meetings

21 Other resources PoPPIE working group Tips for Designing an Accessible Core Outcome Set Consensus Meeting Resources for patient research partners enhancing participation in OMERACT

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