Involvement of consumers in the development of evidence based clinical guidelines: practical experiences from the North of England evidence based guideline development programme

Abstract

Background-Consumer involvement in clinical guidelines has long been advocated although there are few empirical accounts of attempts to do so. It is therefore not surprising that there is a lack of clarity about how and when to involve consumers and what to expect from them within the process of guideline development. Methods-The North of England evidence based guideline development programme has used four diVerent methods of consumer involvement. Results-When individual patients were included in a guideline development group they contributed infrequently and had problems with the use of technical language. Although they contributed most in discussions of patient education, their contributions were not subsequently acted on. In a "one oV" meeting with a group of patients there were again reported problems with medical terminology and the group were most interested in sections on patient education and self management. However, their understanding of the use of scientific evidence in order to contribute to a more cost eVective health care remained unclear. In a workshop it was possible to explain the technical elements of guideline development to patients who could then engage with such a process and make relevant suggestions as a consequence. However, this was relatively resource intensive. A patient advocate within a guideline development group felt confidence to speak, was used to having discussions with health professionals, and was familiar with the medical terminology. Conclusions-Consumers should be involved in all stages of guideline development. While this is possible, it is not straightforward. There is no one right way to accomplish this and there is a clear need for further work on how best to achieve it.

The impact of cancer research: how publications influence UK cancer clinical guidelines

“…They may measure academic influence, but the funders of such research are usually more concerned to see if it has had a practical benefit, especially to patients. One of the ways in which research can influence practice is through its contribution to the evidence base supporting clinical guidelines (Heffner, 1998;Gralla et al, 1999;Connis et al, 2000;Van Wersch and Eccles, 2001;Aldrich et al, 2003). These are increasingly being used across many countries in the routine clinical care of cancer patients.…”

How to develop cost-conscious guidelines

“…[38][39][40] In common with others, the North of England guideline development group had had mixed experience when trying to include a 'token' patient representative. One approach may be to assume that the objective of guidelines is to inform the doctor-patient relationship about the best available evidence on the various attributes of treatment, at which point, patient-specific information must always be introduced into the decision-making process.…”

“…This would entail patients (or their representatives) exploring the available evidence with a trained facilitator, with comments fed back to the guideline process. 38,40 This type of activity is outside the scope of work presented in this report, but may be adopted in ongoing national guidelines.…”

ACCF/AHA Clinical Practice Guideline Methodology Summit Report

“…Patient representatives contributed infrequently to the discussions, had difficulty with the technical language, only contributed during discussions of patient education, and in general felt that their contributions were not subsequently acted on. 5 Involvement of patient representatives requires their understanding of the evidence. Difficulty with medical terminology or other jargon is an important barrier to active or meaningful involvement.…”