Andy Carver (left) and Vikki Entwistle give advice on improving patient participation in guideline development, based on a recent project with SIGN guidelines

The Scottish Intercollegiate Guideline Network (SIGN) was established in 1993 by the Conference of Royal Colleges and their faculties in Scotland, to sponsor and support the development of national clinical guidelines. SIGN has since broadened its membership to include representatives of other health professions and the Scottish Association of Health Councils (SAHC).

There has been increasing interest in involving users of health services in the development and implementation of guidelines, to improve the quality of guidelines and the extent to which they are implemented.

People who have experienced certain conditions and used particular services have important insights that can comlement those of health professionals.1 The involvement of these people in guideline development can help to ensure that guidelines better reflect the needs, priorities and concerns of those they are ultimately intended to serve.

The process by which patient representation has been included in the SIGN Guideline Development Groups (GDGs) has evolved over recent years. SIGN was keen to learn from the experiences of people who have served as patient representatives in the past to inform future patterns of working.

The SIGN Patient Information and Participation Subcommittee commissioned a project to investigate how patient representatives have been involved in GDGs, to examine their experiences and views, and to identify potential for improvements.

All 13 patient representatives who had participated in GDGs were invited to take part in the project and all agreed to do so. Group discussions and individual interviews were conducted during the summer of 1998.

This article describes their experiences and views under the broad headings of recruitment, expertise and experience, role, training and support, contributions made and factors affecting contributions.

Patient representatives were aware of a number of routes by which they became involved in GDGs, although not all knew how they had been identified.

The routes described fell broadly into three categories:

  • They were invited by the Chair of the GDG, as former patients
  • They had been nominated by an organisation
  • They were identified by the SAHC Director through her personal knowledge.

A number of organisations proposed individuals who were, or had previously been, employed as health professionals.

In general, these people reported that this had been a deliberate decision. It was felt that they would 'know the language' and be more able to contribute within a committee of health professionals.

People had varying experiences and expertise relating to the condition for which they were contributing to guidelines. They were patients, carers or health professionals with relevant experience, and some were members, paid workers or professional advisors with patient organisations.

Some people had several different roles in relation to the condition being discussed by the GDG. Their knowledge of research methods, critical appraisal of scientific literature and the processes of guideline development also varied.

Most of the people who were invited to join a GDG as a 'patient representative' felt unsure about their role within the group. This had not been made clear to them when they were recruited.

There was a general feeling that greater clarity was needed regarding the roles of patient representatives within the GDGs and that this should be communicated to all members of the group. The patient representatives felt that this would have helped them to be involved in the most appropriate aspects of the group's work.

They acknowledged they were not 'typical patients' and varied in their ability to represent a broad range of patient views.

Most of the contributors, and particularly those who were not staff members of large patient representative organisations, felt that access to the views of a larger group of patients would have been helpful.

People received varying types and amounts of training and support. Some reported very positively that they had been given clear introductions to SIGN and the processes of guideline development at their first GDG meeting. Some had been given written information on critical appraisal and the offer of training. Others, however, received no such helpful introduction.

The patient representatives felt that they had contributed to the development of guidelines in a variety of ways:

  • Some were involved from the first meeting of their group and contributed to the scoping of the subject. They reported that early involvement in the GDG helped to ensure that questions important to patients were addressed.
  • Some reported active involvement in searching and sifting literature, although this was, for many, a greater time commitment than they had expected.
  • Some also reported involvement in critical appraisal of the literature, although they did not all feel confident in doing this.

The majority of patient representatives had proof-read draft guidelines and participated at the open meetings where draft versions of guidelines were presented for wider consultation. They felt that it was very important to bring patients' perspectives to the development of clinical guidelines, but questioned whether their being involved in tasks such as critical appraisal of the literature was the best means of achieving this.

The patient representatives felt that there was potential to complement their participation in the GDG with other methods of bringing evidence of patients' views to the attention of other group members.

The patient representatives identified several factors that affected their ability to contribute to the process of guideline development. Key factors that helped were:

  • The provision of information and training on the background to guidelines and the 'rocess of developing SIGN guidelines
  • Working in small groups
  • A supportive group Chair who encouraged contributions from patient representatives.

Factors that patient representatives felt hindered their ability to influence guidelines are shown in Table 1.

Table 1: Factors that hindered people's ability to influence guidelines

A sense of isolation when they were a lone 'patient voice'

Lack of knowledge of the methods involved in appraising research and developing guidelines
Not being familiar with aspects of the language
Lack of clarity of their role
Lack of time
They or their family continued to be treated by a member of the group
Lack of research into aspects of care and treatment regarded as being important to patients

People were aware of the importance of basing guidelines on evidence identified using rigorous criteria2, but some were frustrated that there were aspects of treatment and care, which they felt were important to patients, that could not be incorporated as there was no published evidence available to enable recommendations to be made.

A number of potential improvements were identified, and recommendations were made to SIGN that any guideline developers could adopt.

  • Guideline developers should clarify the role that they expect patient representatives to play on guideline development groups. People who are invited to join a group as a patient representative should be given a clear explanation of why they have been invited.
  • It should be recognised that people who contribute to a GDG as patient representatives, like people who contribute as health professionals, vary in their experiences, areas of expertise and skills. The Chair of each group should familiarise him/herself with the types of skill and expertise that the patients' representative can bring and discuss with each individual what they might contribute at each stage of the group's work.
  • Guideline developers should consider using additional complementary approaches to help ensure that guidelines are as sensitive as possible to the needs and priorities of the patients whose care they aim to improve.
  • The inclusion of patient represen-tatives on GDGs may not always be the most appropriate way to ensure that the views of different patient groups are identified. For example, consideration should be given to obtaining the views of a wider patient group.
  • The selection of people to serve as patient representatives on GDGs should reflect the role(s) that they are expected to play. If there are groups or organisations that focus on the condition or treatments of concern to the GDG from a patient's perspectiie, serious consideration should be given to inviting these organisations to nominate a representative.
  • Before approaching any organisation, attempts should be made to identify its underlying ideology, aims, structure and activities. If several organisations hold competing viewpoints it may be necessary to ensure that the different views are represented, though not necessarily by involving more than one organisation in the GDG.
  • If there are no groups or voluntary organisations that focus specifically on the conditions or treatments of concern to a GDG from patients' perspectives, a 'generic' patient advocate or a health council worker might be appropriate.
  • Patient representatives are often contributing voluntarily and should not be out of pocket as a result. Guideline developers should make clear to all GDG members, and other contributors, what expenses can be reimbursed and how these should be claimed.

As part of the evolving process of guideline development, increasing attention has been paid to the incorporation of patients' perspetives. We hope that these recommendations, which are based on the views of those who have been involved so far, will encourage further improvements in the processes of guideline development.

  1. Entwistle VA, Renfrew MJ, Yearly S, Forrester J, Lamont T. Lay perspectives: advantages for health research. Br Med J 1998; 316: 463-6.
  2. SIGN. Clinical Guidelines: Criteria for Appraisal for National Use. Edinburgh: Scottish Intercollegiate Guidelines Network, 1995.

Guidelines in Practice, May 1999, Volume 2
© 1999 MGP Ltd
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