Guideline group composition and group processes: article 3 in Integrating and coordinating efforts in COPD guideline development. An official ATS/ERS workshop report.

BACKGROUND: Professional societies, like many other organizations around the world, have recognized the need to use more rigorous processes to ensure that health care recommendations are informed by the best available research evidence. This is the third of a series of 14 articles that were prepared to advise guideline developers in respiratory and other diseases on considerations for group compositions and group processes in guideline development, and how this can be effectively integrated in the context of respiratory disease guidelines on a national and international level. METHODS: We updated a review of the literature addressing group composition and group process, focusing on the following questions: 1. How to compose a functioning and representative guideline group; Who should be included in a guideline panel?; How to select organizations, groups, and individuals; What expertise is needed?; Consultation with non-included groups. 2. How to assure a functioning group process; How to make the process constructive; Balancing participation and finding agreement; Administrative support; What constitutes sufficient resources? Our conclusions are based on available evidence from published literature, experience from guideline developers, and workshop discussions. RESULTS AND CONCLUSIONS: Formal studies addressing optimal processes in developing guidelines are limited, and experience from guideline organizations supplement the formal studies. When resources are available, guideline development groups should aim for multidisciplinary groups, including patients. Prerequisites for a multidisciplinary group include: a strong chair experienced in group facilitation with broad acceptance in the group, training the group in guideline methodology, and professional technical support. Formal consensus developing methods have proved effective in reaching agreement on the final recommendations.

Integrating values and consumer involvement in guidelines with the patient at the center: article 8 in Integrating and coordinating efforts in COPD guideline development. An official ATS/ERS workshop report.

INTRODUCTION: Professional societies, like many other organizations around the world, have recognized the need to use rigorous processes to ensure that healthcare recommendations are informed by the best available research evidence. They are also realizing the need to involve consumers of healthcare (patients, caregivers, and the public) and integrate their values and preferences in clinical guideline development. This is the eighth of a series of 14 articles that were prepared to advise guideline developers in respiratory and other diseases. It focuses on where to find information about consumer values and preferences, at what points in the guideline development process to integrate their values and preferences, and why. METHODS: In this review, we addressed the following questions: (1) What do we mean by "consumers"? (2) Why integrate the values and preferences of consumers of healthcare (patients, caregivers, and the public) into clinical practice guidelines? (3) What are the sources of information on consumer values? (4) When and how should consumer values and preferences be integrated into chronic obstructive pulmonary disease guideline recommendations? We defined consumers as patients, caregivers, and members of the public, excluding groups that may also be identified as consumers of guidelines including health professionals, providers, and commissioners of services. We searched PubMed and other databases of methodological studies for existing systematic reviews and relevant methodological research. We did not conduct systematic reviews ourselves. Our conclusions are based on available evidence, supplemented by a rapid appraisal of a selection of qualitative studies, experience of what guideline developers are doing, and workshop discussions. RESULTS: A clear distinction needs to be made between the use of information on consumer values and preferences by guideline developers, and the direct involvement of consumers in guideline development processes. Sources of information on consumer values include the research literature and direct elicitation of values both from organizations representing consumer interests and from individuals. To complement the identification of consumer values, there are a range of methods for involving consumers at all stages of guideline development, from consultation to direct membership of guideline development groups. CONCLUSIONS: Evidence-based guidelines need to consider explicitly the values and preferences of all relevant stakeholders (including those of consumers) and to provide opportunities for patients, caregivers, and the public to engage in the processes that consider and integrate those values into the development of guideline recommendations.

Stakeholder involvement: how to do it right: article 9 in Integrating and coordinating efforts in COPD guideline development. An official ATS/ERS workshop report.

INTRODUCTION: Professional societies, like many other organizations around the world, have recognized the need to use more rigorous processes to ensure that healthcare recommendations are informed by the best available research evidence with input from appropriate stakeholders. This is the ninth of a series of 14 articles that were prepared by an international panel to advise guideline developers in respiratory and other diseases on approaches for guideline development. We updated a review of the literature on stakeholder involvement, focusing on six key questions. METHODS: In this review we addressed the following questions. (1) What are "stakeholders"? (2) Why involve stakeholders in guidelines? (3) At what stage should stakeholders contribute to guidelines? (4) What are the potential barriers to integrating stakeholder involvement? (5) How can stakeholders be involved effectively? (6) Should anyone be excluded from the process? We searched PubMed and other databases of methodological studies for existing systematic reviews and relevant methodological research. We did not conduct our own systematic reviews. Our conclusions are based on available evidence, the experience of guideline developers, and workshop discussions. RESULTS AND DISCUSSION: Stakeholders are all those who have a legitimate interest in a guideline. They include healthcare professionals, patients and caregivers, public and private funding bodies, managers, employers, and manufacturers. Their engagement is justified for several reasons, including limitations of evidence, principles of transparency and democracy, ownership, and potential policy implications. They have a role to play at different points of guideline development, but their involvement can be complex. To be successful, stakeholder engagement needs to be inclusive, equitable, and adequately resourced.

The nature and usefulness of patient experience information in producing guidance about interventional procedures.

OBJECTIVES: To evaluate the nature of patient experience input and its perceived usefulness to members of a national Advisory Committee in making decisions about the efficacy and safety of new interventional procedures. DESIGN: Survey of Advisory Committee members about the nature and usefulness of patients' responses to a patient experience semistructured questionnaire. SETTING: Interventional Procedures Programme, NICE. PARTICIPANTS: 16 Committee members who assessed responses to 73 patient experience questionnaires. MAIN OUTCOME MEASURES: Judged nature and usefulness of patient responses to different questions about the experience of patients in using one of nine different procedures. FINDINGS: Most patient responses were scored as useful: <20% were scored as 'unhelpful' or 'very unhelpful.' Committee members felt that patient responses most often supported other evidence but provided no new insights (52-68% of responses for 11 of the 12 questions). Responses to one question (effects of the procedure on specified areas of life) gave new and original evidence which was not present in the literature or expert opinions in 7% cases. Responses to eight of the 12 questions provided insights into sociocultural or equalities issues in 1-7% of cases. CONCLUSIONS: Obtaining patient experience to inform guidance development is complex but provides generally useful supporting evidence and some new insights not available from other evidence. Further research should aim to further develop and validate different methods to obtain patient experience input. The impact of patient experience information on how the Committee decides about whether a procedure is efficacious and/or safe should be made explicit.

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

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.