PATIENT

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PATIENT CARER INVOLVEMENT IN SIGN GUIDELINE
DEVELOPMENT

• Joanne Topalian
• Programme Manager
• Patient Involvement

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Background

• Patients and / or their representatives involved
  in SIGN since 1997
• Scottish Executive Health Department (SEHD)
  funding has enabled us to increase our activities
  
• New procedures established piloting others.

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Why involve Patients and Carers?

• So that
• the guideline addresses the key issues that
  matter to patients and carers and so that,
• patients and carers perspectives are reflected
  in the guideline

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Traditional SIGN guideline development
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What did we do?

• Set up Project Steering Group
• Recruited new member of staff
• Established priorities and budget
• Planned different approaches for piloting with
  existing guideline groups
• Identified external facilitator
• Raised awareness amongst SIGN Council and all
  guideline development groups members
• Set time-scales
• Started developing the Patient Network

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What is the SIGN Patient Network?

• A virtual group of 120 people
• Current and past patient representatives on SIGN
  guideline groups
• Trust Directors of Public Involvement
• Leads from voluntary sector organisations
  relevant to our work programme
• Specialists in patient involvement from a variety
  of academic/professional/personal backgrounds

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Roles of the Patient Network

• assist with recruitment to guideline groups for
  difficult topics
• promote National Meetings and other SIGN events
  to a wider audience
• help us identify patient peer reviewers
• source of support for new guideline group
  patient/carer representatives
• raise profile / cascade knowledge of SIGN

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3 mains areas of patient involvement explored

• 1. Identifying patient and carer concerns
  views prior to drafting the key questions
• 2. Listening to patient views throughout the
  guideline development process (e.g. recruitment
  to guideline groups)
• 3. Consultation processes (National Open
  Meetings Peer review)

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• 1. Identifying patients and carers concerns

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Identifying patients and carers concerns-
approaches tested -

• In-house approaches
• Writing to key organisations / voluntary sector -
  what issues would they like to see the guideline
  address?
• Checking with other clinical effectiveness
  organisations - are they aware of any recent work
  in this area?
• New SIGN Literature Search
• External approaches
• SIGN organised meetings for patients / carers
  e.g. stoke dysphagia
• Focus groups with patients / carers / different
  audiences across Scotland e.g. alcohol
  dependency epilepsy in young people
• Meeting with patient/carer support groups e.g.
  bipolar, stroke
• Meeting with voluntary sector agencies e.g.
  bipolar cancer

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New SIGN literature search

• SIGN Information Team search protocol
• Results are sifted and sorted into key themes
• Key themes fed back to guideline development
  group 1st meeting
• Guides key questions / remit

not everything important can be researched. not
everything researched is important..
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Identifying patient concerns- breast cancer
guideline review- the patient issues
literature search
gt600 papers identified
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Identifying patient concerns- breast cancer
guideline review- the patient issues
literature search
lt reduced to 100
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Identifying patient concerns- breast cancer
guideline review- the patient issues
literature search
25 main themes identified
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Identifying patient concerns- breast cancer
guideline review- the patient issues
literature search

• Helped guide some of the key questions concerned
  with
• psychological stress
• techniques for psychosocial support for patients
  and/or their carers and families
• communication methods that can improve patient
  satisfaction or psychosocial morbidity
• skills required of those delivering information
  to patients

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Is the literature search always enough?

• New Epilepsy in children guideline
• 304 papers identified ? sifted to 89
• 9 main themes emerged
• General practice care, secondary care, continuity
  of care, anticonvulsant drugs, non-pharmacological
  approaches, living with epilepsy, schooling,
  health professionals communication info-giving
  skills, mortality

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Is the literature search always enough?

• NO!
• not necessarily!

• How much literature was identified?
• Was their much range in types of papers
  (patients, outcomes, research?
• Mainly generic or specific issues discussed?
• Scotland-specific?
• Any areas not researched (types of patient group
  for example)

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Epilepsy in children

• 4 focus groups held - 1 parents / 3 young people
• Glasgow, Edinburgh Dundee
• At times to suit those participating
• External facilitator
• Main issues fed back to 2nd meeting of guideline
  development group

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Feedback from focus groups

• GPs playing a very limited role
• Missing health professionals from guideline
  development group?
• Privacy needed
• Information on impact on young peoples lives
  required
• Variation in knowledge/practice in schools

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Outcomes from this work?

• Key questions now take on board a range of
  patient issues
• A dentist will be recruited to the group at a
  later stage
• Title of the guideline altered from Epilepsies in
  children to Epilepsies in children and young
  people
• Will have to wait and see the result!

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• 2. Recruitment to guideline development groups

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Patient representatives on guidelines groups

• A minimum of two reps per group
• Recruitment process starts upto 6 months prior to
  expected start date of group
• Must be aware of patient confidentiality
• Be clear about the commitment
• Voluntary orgs nominate
• Difficult to recruit groups - try other
  approaches
• Avoid representation fatigue
• Will you pay them for their time?

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Pat rep recruitment issues

• Is the Chairman of group committed?
• Try and avoid people with a specific axe to
  grind - all members of the group aim to
  represent general views - not just their own
• Need experience of meetings OR you should provide
  training
• On-going support essential
• Make best use of their skills

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Training and Support for patient representatives

• SIGN introduction to critical appraisal training
• SIGN methodology training
• SIGN 50
• SIGN information leaflet for potential patient
  representatives and voluntary organisations
• web site section on patient involvement
• invited to join SIGN Patient Network access to
  a buddy
• Patient Network events / informal meetings

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• 3. Consultation processes

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National Open Meetings

• Patient/carer/voluntary org speakers
• Invite relevant voluntary groups
• Not a free-for-all for any member of the public -
  could be a distressing experience if you are not
  forewarned
• Free spaces / travel
• Different ways to comment (paper, verbal, email)
• Voluntary sector invited to put up stands

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Peer review

• Always include patient representation in your
  peer review processes
• Can be difficult to identify suitable peer
  reviewers
• Be clear about what you are asking them to do
• Give plenty of time
• Acknowledge and feedback

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General issues to consider

• What do we know from other guideline groups about
  patient concerns?
• Is there a role for generic KQs?
• How can we avoid wheel-reinventing?
• Always remember peoples motivation for being
  involved

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Current SIGN guideline development, August 2002
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www.sign.ac.uk
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www.sign.ac.uk