Why involve patients and carers?

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

SIGN awareness volunteers

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

SIGN is proactive in:

• circulating guidelines and patient versions widely, and
• supporting healthcare professionals to put guidelines into practice to improve the quality of NHS services.

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 was established to 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.

How are awareness volunteers recruited?

SIGN recruits volunteers through voluntary groups, charities and volunteer centres. We aim to recruit people from all walks of life including those from equality and diversity groups.  Those who are interested in joining are asked to complete an application form and personal statement.  Open information sessions are available for people to find out more about the role and to meet SIGN staff.  Nominations are considered by SIGN’s Patient Involvement Officer and Director.  Potential volunteers are invited to an informal interview with SIGN staff. 

How much time do awareness volunteers have to give?

Awareness volunteers are free to give as much time as they wish to SIGN.   We do ask that they make sure they have the time to commit to at least two awareness raising activities per year and a few hours per month. 

What skills are required?

We do not ask for specific skills or knowledge as volunteers will be fully trained to carry out this role.  It does, however, help if volunteers have some of the following:

• enthusiasm
• time to commit to the work of the group (eg identify awareness raising opportunities, preparing for and participating in awareness raising activities)
• good communication and team working skills.

Are expenses reimbursed?

We can’t pay our volunteers 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.

What can awareness volunteers expect from SIGN?

• appreciation and respect
• 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 do awareness volunteer receive?

To help volunteers become confident in their role, the Patient Involvement Officer provides volunteers with training that involves:

• providing background on how SIGN guidelines are developed and how patients are involved in the process (through presentations and observation of guideline group meetings)
• presentation and communication skills, and
• pairing up with a buddy (lay representatives already involved with SIGN).

The Patient Involvement Officer provides email and telephone support to volunteers.  The group meets with the Patient Involvement Officer twice a year to identify good practice, problems and possible improvements.

Interested in becoming an awareness volunteer?

If you are interested in becoming a SIGN awareness volunteer, please email karen.graham2@nhs.net or phone her on 0131 623 4740 for further information.  

 

Scottish Intercollegiate Guidelines Network,
Elliott House, 8-10 Hillside Crescent,
Edinburgh EH7 5EA
Web contact duncan.service@nhs.net
Last modified 17/04/13
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