SIGN 50: A guideline developer's handbook - Section 4: Involving patients and their representatives

Section 4: Involving patients and their representatives

4.1 PATIENT INVOLVEMENT IN GUIDELINE DEVELOPMENT

The term patients is used throughout this chapter as a generic term to describe patients, carers, lay representatives and those who represent and/or support patients in the voluntary sector.

Patient involvement is ‘the appropriate, active participation of patients, carers and patient representatives as partners in their own care and in the planning, monitoring and development of health services.⁸ The potential contribution of patient representatives has been recognised for some time, as well as the difficulties in making that contribution effective.⁹

Patients may have different perspectives on healthcare processes, priorities, and outcomes from those of health professionals. The involvement of patients in guideline development is therefore important to ensure that guidelines reflect their needs and concerns. The purpose of patient involvement is to ensure that the guideline addresses issues that matter to them and that their perspectives are reflected in the guideline. Patients can identify issues that may be overlooked by health professionals, can highlight areas where the patient’s perspective differs from the views of health professionals, and can ensure that the guideline addresses key issues of concern to patients.

Patient representatives on guideline development groups can remind the other group members of the limitations of the scientific findings in respect of age, disability,, gender, ethnicity, race, sexual orientation, quality of life and life circumstances such as accessibility. They help to ensure that the group gives consideration to the specific needs of particular ethnic or social groups - information and communication needs, for example. Factors such as age and gender may have an influence over choice of treatment setting – eg males may be less likely to access GP services - and patient representatives can remind the group of this.

A wide range of other issues can be drawn out by patient representatives to make sure a guideline addresses the needs of all those affected by a condition. The influence of religion/belief on compliance with treatment -. eg complying with a recommended diet or medication, or a different approach to STI screening being required for people in prison and those who are homeless.

Patient representatives can also assist the group on the use of clear and sensitive language in the guideline.

4.2 IDENTIFYING PATIENTS’ VIEWS

4.2.1 LITERATURE SEARCH

SIGN has developed a literature search strategy to identify both qualitative and quantitative studies that reflect patients’ experiences and preferences in relation to the clinical topic (see Chapter 6.1). This search is performed at least three months prior to the first group meeting to ensure adequate time to obtain relevant papers and summarise their findings for presentation at the first guideline group meeting.

The types of studies identified generally include patients’ views on:

positive and negative experiences of the condition, including diagnosis, medication and other treatments, follow-up care and quality of life
unfulfilled needs
information needs and preferences
participation in decision making about treatment
overall satisfaction with care received.
A copy of the Medline version of the patient search strategy is available on the SIGN website www.sign.ac.uk

4.2.2 PATIENT ORGANISATIONS AND SIGN PATIENT NETWORK

SIGN writes to the organisations and charities that aim to represent and/or lobby for patients at least four months before the first meeting of the guideline development group, asking them to inform SIGN of the issues they think the guideline should address. A form is supplied to enable them to structure their feedback in a useful way and, importantly, to indicate the source(s) of their suggestions (eg telephone help line data, surveys).

SIGN also writes to members of the Patient Network asking them which issues they think the guideline should address. The Patient Network is a database of patient, carer and other user representatives. The Network includes contacts for both individuals and organisations, including NHS Board Designated Directors for patient and public involvement, equality and diversity group stakeholders (for example,eg REACH community health project), previous and current patient representatives on SIGN guideline development groups, representatives from patient advocacy services, representatives from patient support organisations, and representatives from relevant Scotland wide groups.

4.2.3 OTHER NHS ORGANISATIONS

SIGN writes to various other NHS organisations at least four months before the first meeting of the guideline development group to find out if any local research on patient views has been performed. This might include, for example, patient focus groups to help in the redesign of services, or questionnaire studies to gauge levels of patient satisfaction with existing services. Reports such as this tend not to be published even though they are in the public domain and can be very useful as a snap shot into current patient issues and concerns regarding particular NHS services and treatments.

4.2.4 DIRECT FEEDBACK FROM USERS OF THE SERVICE

Where published evidence is scarce and inadequate feedback from patient organisations has been received, patient and carer views may be sought via direct contact with users of the service. Techniques employed to date have included focus groups with patients in different regions of Scotland, attending patient support group meetings, and SIGN organised meetings for patients and carers. All of these approaches have provided valuable information that has been fed back directly to guideline groups to influence the remit and key questions underpinning the guideline. Often the guideline development group identifies a need for further input from patients and carers at a later stage of the guideline development process. Focus groups can be carried out and the findings used to complement the scientific evidence.

Running focus groups requires expert facilitation. Views are sought from both men and women of different age groups, in both rural and urban communities. Special efforts are made to include those who are socially excluded and may be less likely to join a local or national organisation. SIGN does this by working with healthcare professionals, local community groups and schools who can help identify people to take part.

4.2.5 PRESENTING THE FINDINGS

The Patient Involvement Officer reviews the results of the patient literature search, and seeks to identify common themes that emerge from the literature. These themes are then integrated with the issues that emerge from the other approaches described above presented at the first meeting of the guideline development group by the Patient Involvement Officer.

The group is asked to take cognisance of these issues when it drafts its key questions. Once a first draft of the key questions has been prepared, the Information Officer working with the group along with the Patient Involvement Officer compares the questions with the issues highlighted through the consultative process and highlights any that have not been included in the key questions. At a subsequent group meeting the results of this comparison are presented to the group, and they are asked to consider whether the questions should be revised.

Guideline groups are not obliged to take on board all the issues raised through the patient consultative process, but they are expected to give explicit reasons if they choose to omit particular topics that have arisen from this source.

4.3 RECRUITMENT OF PATIENTS TO GUIDELINE DEVELOPMENT GROUPS

SIGN recruits a minimum of two patient representatives to guideline development groups by inviting nominations from the relevant “umbrella”, national and/or local patient focused organisations in Scotland. Where organisations are unable to nominate, patient representatives are sought via other means, eg from consultation with health board public involvement staff. Where patients have been consulted directly (eg if a focus group has been held) this may also provide a source of possible future patient and carer representatives.

Details of the role of the patient representatives, the support they will be given, the commitment required and useful attributes for representatives are provided to allow informed nominations to be made.

4.4 ROLE OF PATIENT REPRESENTATIVES ON GUIDELINE DEVELOPMENT GROUPS

Although their areas of expertise will vary, members of the guideline development group have equal status on the group. A key role for patient and carer representatives is to ensure that patient views and experiences inform the group’s work. This includes:

ensuring that key questions are informed by issues that matter to patients
identifying outcome measures they think are important for each key question
considering the extent to which the evidence presented by group members has measured and taken into account these outcome measures
identifying areas where patients’ preferences and choices may need to be acknowledged n the guideline
making sure that the degree to which the evidence addresses patients’ concerns is reflected in the guideline
helping to write the Information to Patients chapter of the guideline, including identifying sources of further information
raising awareness of patient issues at the National Open Meeting by preparing a presentation ssisting SIGN with the identification of voluntary organisations and charities to invite to the National Open Meeting
helping to ensure that the guideline is sensitively worded (for example treating patients as people and not as objects of tests or treatments)
identifying individuals to take part in the peer review process
assisting SIGN with the collection of patient views eg by helping to prepare questions for focus groups
helping SIGN with consultation arrangements
appraising literature (if the individual chooses to do so)
raising awareness of the SIGN guideline among members of their support group and members of the public.

No formal qualifications are needed but it may be helpful if patient representatives have some of the following:

experience of the guideline condition (eg as someone who has, or has had the condition, or a carer or relation of someone who has or has had the condition)
an understanding of the experiences and needs of a wider network of patients (eg as a member of a patient support group)
time to commit to the work of the group (eg attending meetings, background reading, commenting on drafts)
some familiarity with medical and research language (although members of the guideline group should help with specific technical terms)
willingness to feed in the views of patient/carer groups not represented on the guideline group
ability to be objective
good communication and team working skills.

4.5 SUPPORT FOR PATIENT REPRESENTATIVES ON GUIDELINE DEVELOPMENT GROUPS

SIGN supports patient representatives by:

delivering introduction to SIGN training for patient representatives
offering telephone and email support
inviting new patient representatives to join the SIGN Patient Network
providing clear guidance on their roles and responsibilities within the group
ensuring opportunities to attend training events are open to all guideline development group members
inviting patient representatives to informal events.

In addition, SIGN is exploring the development of other types of support for patient representatives including the production of a patient handbook and CD-ROM, introducing a “buddy” system, and the development of a critical appraisal course aimed specifically at lay representatives.

The Chair of each guideline development group is asked to support patient representatives by:

ensuring patient representatives are fully engaged with the group
addressing the group if contributions by patient representatives are not acknowledged appropriately
welcoming and encouraging contributions from patient representatives.

4.6 WIDER CONSULTATION WITH PATIENTS AND CARERS

Further patient and public participation in guideline development is achieved by involving patients, carers and voluntary organisation representatives at the National Open Meeting which is held to discuss each draft guideline (see Chapter 8.1). The meetings are advertised widely and are free of charge.

Patient representatives are invited to take part in the peer review stage of each guideline and specific guidance for lay reviewers has been produced.

Members of the SIGN patient network are also invited to comment on draft documents such as patient versions of guidelines, patient chapters of guidelines and other literature aimed at patients.