Consumer collaboration, patient‐defined outcomes and the preparation of Cochrane Reviews

Abstract

Objectives To identify the extent to which the Cochrane Collaboration involves consumers (patients, carers, patient and non‐patient members of patient/consumer organizations) as members of Cochrane Review Groups (CRGs); to explore the emphasis CRGs place on identifying and collecting information on outcomes identified by patients as being important indicators of quality and effectiveness of treatment and care (‘patient‐defined outcomes’). Method A postal questionnaire designed by The College of Health, a UK patient organization, was sent in January 1998 to all CRGs registered with the Cochrane Collaboration on 1 January 1998 (n = 42). Results and conclusions Replies were received from 35 CRGs, a response rate of 83% and 33 questionnaires (79%) were completed. The survey revealed that CRGs varied in the extent to which they had recruited consumer members: almost one third of respondents said their CRG did not have any consumer members. There was also no apparent consensus across CRGs on the importance attached to identifying and collecting information on patient‐defined outcomes or on integrating such information into their activities. It is hoped that differences between CRGs may inform discussions as to whether and how the Cochrane Collaboration might address the issue of patient‐defined outcomes in the future.

Qualitative study of depression management in primary care: GP and patient goals, and the value of listening

“…Given the diversity of perspectives on depression and the implications of these for clinical practice, the development of tools or procedures to identify patients' models of depression and their attitudes towards various management options would be a useful way forward. 44 This study's finding of such a range of differing views on the desired outcome of managing depression also has implications for the outcomes assessed in clinical trials, 45 and for GPs' implementation of evidence-based medicine, since the evidence base may not address outcomes salient to all patients. Research methods as well as guidelines need to show greater awareness of the varied perspectives about depression.…”

Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approach

“…These principles encapsulate consumer involvement and we found several reports of consumer involvement in the Cochrane Collaboration. Cochrane Review Groups are collaborations between consumers and professionals which are often less formal than committee membership, [28][29][30][31] perhaps necessarily in view of their international nature. Teamworking may be a more appropriate descriptor.…”

“…31 The emphasis on 'patientdefined' outcomes rather than 'patient-centred' outcomes invoked consumer involvement in setting research agendas. The survey found that four Review Groups had made some headway involving consumers through a variety of mechanisms.…”

“…29 The underpinning philosophy of collaboration did not always translate in practice into partnerships of equals. Lack of a consistent strategy for involving consumers in review groups 28,31 could be seen as a disadvantage. This may explain why some groups lagged behind in identifying patient-defined outcomes 31 and why some faced difficulties involving consumers at all.…”

Newborn screening for congenital heart defects: a systematic review and cost-effectiveness analysis

“…293,294 Patient-based outcome measures can contribute to the evaluation of the quality of health care and the performance of health professionals 295 play a role in consumer involvement in the wider health services research agenda. 296 Generic instruments for measuring patient-based outcomes can be divided into those that are not preference-based (quality of life, health profiles or health status measures) and preference-based measures (including utilities).…”