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

Session: 

Oral session: Patient or healthcare consumers involvement and shared decision-making (6)

Date: 

Monday 17 September 2018 - 14:00 to 14:20

Location: 

Sidlaw Auditorium

All authors in correct order:

Lytvyn L1, Siemieniuk RA1, Macdonald H2, Price A2, Lyddiatt A3, Brandt L4, Heen AF4, Guyatt G1, Agoritsas T5, Vandvik PO4
1 McMaster University, Canada
2 The BMJ, UK
3 Cochrane Consumers, Canada
4 University of Oslo, Norway
5 University of Geneva, Switzerland
Presenting author and contact person

Presenting author:

Lyubov Lytvyn

Contact person:

Lyubov Lytvyn
Abstract text
Background:
BMJ Rapid Recommendations (RapidRecs) are trustworthy guidelines published in the BMJ and MAGICapp.org in response to practice-changing evidence. They are developed by unconflicted international panels of clinical experts, methodologists, and patients and carers.

Objectives:
To determine the feasibility and effect of patient/carer partnership at each step of guideline development.

Methods:
For each RapidRec, we recruit patient/carer partners from consumer organisations, panel member referrals and TaskExchange. Partners receive an invitation, conflict of interest form and phone call describing the 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 the draft recommendations and manuscript as co-authors. We will conduct interviews with partners about their experience, and identify the strengths and weaknesses of our approach. We will review impact by reporting the unique contributions made by partners for each RapidRec.

Results:
To date, we have had 33 partners in 11 guidelines, from TaskExchange (3), Cochrane Consumers (4), general consumer organisations (8), health condition-specific organisations (8) and referrals (10). Preliminary feedback regarding process and contributions has been very positive. RapidRecs are focused guidelines, thus our approach may not generalise to complex guidelines. Areas for improvement are dissemination and scaling up of methods for other guidelines, maximising patient/carer involvement without excessive burden, producing guidance on patient/carer partnership for guideline development organisations, and documenting the challenges (e.g. recruitment, education) and resources required. The project results will be presented.

Conclusions:
We provide a proof-of-concept that meaningful patient partnership is achievable, producing more trustworthy, relevant and patient-centred guidelines for shared decision-making.

Patient or healthcare consumer involvement:
Patients/carers (33) were guideline panel members and co-authors, included from protocol development to manuscript publication.

Relevance to patients and consumers: 

Patients and consumers should be involved in all aspects of guideline development. With the BMJ RapidRecs project, we propose a model for partnerships with patients and consumers, where they are members of an international multi-disceplenary guideline panel, and co-produce evidence-based systematic reviews and clinical practice guidelines.