Article type
Year
Abstract
Background:We received a 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 prioritisation ensures that we produce the most important reviews for this patient group.
Objectives:To develop Cochrane protocols and reviews, a COPD survey, 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 6 months for 90 minutes in which 2-3 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 (patient information leaflet).
Results:During 24 months of the programme grant, we have had four patient meetings. Patients have 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 the relative priority of possible patient-important topics (maintenance rehabilitation), and approved our decisions to progress with reviews. We obtained 200 responses from the survey. Eight themes identified have helped to develop new topics for the programme grant and the patient blog increased survey uptake. Patients have helped us to meet requirements of the new peer review policy (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. Patients are helping us to develop a leaflet that will consist of information about evidence from important reviews, and also about Cochrane Airways.
Conclusions:Patient involvement is an important and rewarding part of our programme grant, enabling development of review questions, protocols and complete reviews that reflect the patient perspective. Patients have also made a valuable contribution survey development and the patient information leaflet. Patient involvement requires appropriate resources, which should be factored in during the grant application stage. 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:
Objectives:To develop Cochrane protocols and reviews, a COPD survey, 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 6 months for 90 minutes in which 2-3 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 (patient information leaflet).
Results:During 24 months of the programme grant, we have had four patient meetings. Patients have 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 the relative priority of possible patient-important topics (maintenance rehabilitation), and approved our decisions to progress with reviews. We obtained 200 responses from the survey. Eight themes identified have helped to develop new topics for the programme grant and the patient blog increased survey uptake. Patients have helped us to meet requirements of the new peer review policy (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. Patients are helping us to develop a leaflet that will consist of information about evidence from important reviews, and also about Cochrane Airways.
Conclusions:Patient involvement is an important and rewarding part of our programme grant, enabling development of review questions, protocols and complete reviews that reflect the patient perspective. Patients have also made a valuable contribution survey development and the patient information leaflet. Patient involvement requires appropriate resources, which should be factored in during the grant application stage. 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: