Innovative patient and carer partnership in creating trustworthy guidelines, from protocol to publication: A case study of BMJ Rapid Recommendations

Article type
Authors
Lytvyn L1, Siemieniuk RA1, Macdonald H2, Price A2, Lyddiatt A3, Brandt L4, Heen AF4, Guyatt G1, Agoritsas T5, Vandvik PO4
1McMaster University
2The BMJ
3Cochrane Consumers
4University of Oslo
5University of Geneva
Abstract
Background: The BMJ Rapid Recommendations (RapidRecs) are guidelines developed in response to potentially practice-changing evidence, following the GRADE approach and the Institute of Medicine trustworthy guidelines criteria. They are produced by the MAGIC Evidence Ecosystem Foundation in partnership with The British Medical Journal (BMJ). RapidRecs are published along with infographics, with linked systematic reviews, and decisions aids, in The BMJ and MAGICapp.org. RapidRecs are developed by international panels of unconflicted clinical experts, methodologists, and patients and carers. All communication is via teleconference, phone, and email.

Objectives: We sought to determine the feasibility and effect of patient/carer partnership at each step of rapid guideline development.

Methods: For each RapidRec, we recruit patient/carer partners from general and health-specific organisations, panel member referrals (provided that patients/carers are not in their circle of care), Cochrane TaskExchange, and Twitter. Partners receive an invitation, conflict of interest form, and teleconference or phone call describing the RapidRecs project, expected commitment, and timelines. Those who participate: 1) identify and prioritise patient-important outcomes for the supporting systematic reviews; 2) identify practical issues for shared decision making; 3) engage in an education session before panel deliberations; 4) participate in deliberation teleconferences; and, 5) edit draft recommendations and manuscript as co-authors. We will conduct interviews with patient/carer partners to describe their experience, perspective on contributions, and identify strengths and weaknesses of our approach. We are also developing a systematic approach to evaluate the contributions and their impact from all guideline panel members.

Results: To date, we published 16 guidelines, including 43 partners from 14 countries. Partners were recruited from referrals (N=12), general organisations (N=11), health condition-specific organisations (N=11), TaskExchange (N=7), and Twitter (N=2). Preliminary feedback from patients/carers and other panel members has been positive regarding the partnership process and contributions from patients/carers. Areas of improvement that we are pursuing are establishing an honorarium for patient/carer panel members, collaboration and knowledge exchange with others in the field of patient-oriented research, establishing relationships with patient/carer organisations, maximising patient/carer involvement while managing burden, as well as documenting challenges and resources required (e.g. recruitment, education).

Conclusions: We provide an example of a patient/carer partnership initiative for guideline development that is feasible, and may produce more trustworthy, relevant, and patient-centred guidelines for shared decision-making.

Patient or healthcare consumer involvement: Patients/caregivers are involved in every RapidRecs guideline. Two co-authors (AP, AL) of this abstract are consumers in addition to their research role.