Involvement of patients in the development of Cochrane protocols, a chronic obstructive pulmonary disease survey and a patient blog

Session: 

Oral session: Patient or healthcare consumers involvement and shared decision-making (2)

Date: 

Wednesday 23 October 2019 - 11:00 to 12:30

Location: 

All authors in correct order:

Janjua S1, Fortescue R1, Baker E1, Threapleton C1, Dennett E1, Cates C1
1 Cochrane Airways Group, Public Health and Research Institute, St. George's, University of London, UK
Presenting author and contact person

Presenting author:

Sadia Janjua

Contact person:

Abstract text
Background: Cochrane Airways received a National Institute for Health Research (NIHR) programme grant to produce reviews for patients with chronic obstructive pulmonary disease (COPD). We recognise that involving people living with COPD in the process of research prioritization helps to ensure that we produce the most important reviews for this patient group.

Objectives: to develop Cochrane protocols and a COPD survey with involvement from COPD patients, to recruit new consumer peer referees and authors, and to involve consumers in knowledge translation.

Methods: nine COPD patients have volunteered from a larger patient advisory group at St. George’s Hospital, London. Patients are involved in five areas:
1) regular meetings every six months for 90 minutes, in which two to three Cochrane Airways members (and a COPD clinical specialist) guide discussion of review topics;
2) development of a one-off patient survey to capture broader opinions;
3) writing a blog;
4) providing consumer refereeing and authoring;
5) knowledge translation.

Results: during the first 18 months of the programme grant, we have had three patient meetings. Patients suggested new topics we had not previously considered, including a review about air pollution. They have helped us to refine review topics and suggested possible additional approaches for reviews, including new outcomes. They have given guidance about relative priority of two possible patient-important topics (end-of-life care and maintenance rehabilitation), and approved our decisions to progress with reviews. We have obtained 200 responses from the survey, of which 50 have been from COPD patients. The eight themes identified have helped to develop new topics for the programme grant and the patient blog has increased survey uptake. Patients are helping us to meet requirements of the new peer review policy, which suggests that every review should have a consumer referee. One patient, involved as an author, will guide us on patient perspective in interpretation of findings in that review.

Conclusions: patients have made a valuable contribution to our programme grant activities. As the grant progresses, we plan to involve patients in knowledge translation efforts, for example, helping to present findings in a suitable format for patients.

Patient or healthcare consumer involvement: patient involvement is an important and rewarding part of our programme grant that has enabled us to develop review questions, protocols, and complete reviews that reflect the patient perspective. Patient involvement requires appropriate resources, which should be factored in during the grant application stage.