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:

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

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.

How can my involvement help?

How would I benefit from becoming involved?

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:

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:

What can I expect from SIGN? 

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:

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

SIGN awareness volunteers

Involving patients, carers and members of the public in SIGN’s dissemination and implementation strategy

SIGN is proactive in:

As part of this approach and to support SIGN’s commitment to involving patients and carers in all aspects of guideline activity, a group of lay volunteers raise awareness of guidelines and patient versions with patients and healthcare professionals.

WHAT IS THE ROLE OF AWARENESS VOLUNTEERS?

  1. actively identifying awareness raising opportunities and advising the Patient Involvement Officer at SIGN of these
  2. helping SIGN to exhibit at events, giving talks to patient groups
  3. contacting local groups and clubs to encourage them to host awareness talks to help raise
    awareness of SIGN’s work (for example, Community Health Partnerships, community and user
    groups)
  4. identifying groups to distribute guidelines, patient booklets and information leaflets to and
    helping them distribute them to relevant groups they are involved with
  5. contributing to advertising materials such as leaflets and posters
  6. highlighting patient issues of concern which arise from awareness raising activities.

If you are interested in hearing more about awareness volunteers, email karen.graham2@nhs.net or phone her on 0131 623 4740 for further information.

Joining a Group <Patient Involvement <Home