Joining a Group

Why involve patients and carers?

[Join a group graphic]

We want patients and carers to be part of our guideline development groups so that their views will complement the evidence and the knowledge and experience of healthcare professionals. We have at least two patient representatives on each SIGN guideline development group. We ask voluntary organisations and members of the patient network to nominate people who they think could join a guideline development group. Nominees give SIGN a short personal statement that explains why they are interested in the guideline and telling us about the experience and skills they could bring to the group. The statements are considered carefully by SIGN. Nominees are then invited to an informal meeting with the Patient Involvement Officer before the first guideline development group meeting.

Who can join a guideline development group?

Anyone can become involved in SIGN’s work. We don’t ask for specific skills or knowledge, but it does help if you have some of the following:

direct experience of the guideline condition (e.g. as someone who has or has had the condition, or the carer/family member of someone who has the condition)
an understanding of the needs and concerns of a wider network of patients (e.g. as a member of a support group)
time to commit to the work of group (e.g. attend meetings, do background reading and comment on drafts)
a willingness to convey the views of patient/carer groups not represented on the guideline development group
some experience of working in large groups
good communication and team working skills
enthusiasm and commitment

If you are in any of these groups, you might be interested in working with SIGN:

patients and potential patients
carers
members of the public who use health services
members of voluntary organisations who represent patients

You can choose how much you want to be involved in the guideline development process. If you are interested, you might like to look at a summary of the guideline development process before choosing how involved you’d like to be. The options include:

Full group member: This is for patients and carers who can commit to attending all group meetings over a two to three year period.

Key stage member: Patients and carers can be involved at certain stages of guideline development. Key stage members are asked to attend all group meetings until the key questions are finalised (3-4 meetings). They can also attend the National Open Meeting and may nominate a lay representative to review the draft guideline.

Advisor: An advisor is someone who has in depth knowledge of the condition but is unable to commit to attending meetings for the lifetime of the group. An advisor would be expected to attend the first two meetings of the group. They may wish to give a talk to the guideline development group based on their expertise. The advisor would be happy for the group to contact them at other stages of the guideline development to help with specific issues

How can my involvement help?

It brings a patient perspective to the discussion
identifying areas where you think services and patient pathways could be improved
ensuring that the patient issues are taken into account throughout the guideline development process
helping to disseminate patient information

How would I benefit from becoming involved?

having a say on a condition that has or might affect you or your family
helping to develop a guideline on a condition that is important to you
learning about the condition and the latest research
learn new skills and gain knowledge eg how to understand medical evidence, peer review guidelines and develop patient versions of guidelines
meeting new people from all aspects of healthcare and services

What will I be asked to do?

You will be a member of a multi-disciplinary guideline development group. Your role will be to use your experiences and views to inform the guideline development group’s work. This may include:

attending group meetings every 2-3 months for approximately two years
ensuring that the guideline takes into account issues that matter to patients/carers
identifying areas where patients/carers feel services could be improved
helping to write the provision of information section of the guideline
raising awareness of patient and carer issues at the National Open Meeting
helping to develop the patient version of the guideline
helping to raise awareness of the guideline and patient version

Will I be paid?

We can’t pay you a salary but all travel expenses and other out of pocket expenses will be reimbursed, for example:

costs of travel to and from meetings
parking charges
child care
loss of earnings

What can I expect from SIGN?

appreciation, respect and being valued
safe working conditions
support
relevant information and training opportunities
information in a format that is suitable (eg large print, Braille or another language)

What training and support will I receive?

All patients and carers recruited to groups are given a one to one induction to SIGN by the Patient Involvement Officer. You would also be asked to attend ‘introduction to SIGN’ and ‘introduction to critical appraisal’ training courses to help you gain an understanding of how SIGN works and to give you the knowledge and skills to participate on a guideline development group.

You will be given a copy of SIGN 100, our handbook for patient and carer representatives. This will help guide you through the guideline development process.

The Patient Involvement Officer offers on-going telephone and e-mail support to all patient and carer representatives. A number of SIGN buddies are available to meet and support new patient representatives, face-to-face, by e-mail or by telephone. SIGN buddies are patient or carer representatives who currently sit on a guideline development group or who have done so in the past. An informal get-together for patient and carer representatives is held twice a year to allow patient representatives to meet, share experiences and support each other.

How can two patient representatives on a guideline development group represent all patients?

We can’t expect one or two patients to be representative of all patients with a particular condition. What we do ask is for patients on groups to offer a patient perspective and feel able to present a wide range of people’s views and feedback. This may be easier if for example, someone is involved with a local support group and can present their views to the group.

Is joining a guideline development group the only way I can become involved with SIGN?

No. Recruitment to guideline development groups is only one way we involve people in our work. Some of the methods for involving include:

peer reviewing a guideline – see consultations
commenting on a patient version of a guideline – see consultations
attending a national open meeting – see consultations
taking part in focus groups or surveys – see consultations
identifying the issues that are important to patients and carers using our on-line submission form

Joining a SIGN guideline development group - a patient's perspective