Patient, carer & public involvement in clinical guidelines: the NICE experience


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Presentación de Victoria Thomas, Associate Director, Patient & Public Involvement Programme de NICE, sobre la participación de pacientes, ciudadanos y público en general en el desarrollo de guías de práctica clínica del NICE. Ponencia realizada en la Jornada Científica GuíaSalud 2010 "La participación de los pacientes en las Guías de Práctica Clínica".

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Patient, carer & public involvement in clinical guidelines: the NICE experience

  1. 1. Patient, carer & public involvement inclinical guidelines –the NICE experienceVictoria ThomasAssociate Director, Patient & Public Involvement Programme May not be reproduced without the permission of NICE
  2. 2. Core principles of all NICE guidance • Comprehensive evidence base • Expert input • Patient and carer involvement • Independent advisory committees • Genuine consultation • Open and transparent process • Equalities considerations • Regular review
  3. 3. Patient and public involvement: in what?Opportunities for involvement exits for all types ofNICE guidance
  4. 4. NICE patient and public involvement policyThe views of patients and the public matter to NICE.We want to involve them, as well as doctors, nurses,other health professionals and managers in ourwork.By working with patients and the public andorganisations that represent their interests, NICEaims to produce guidance that addresses patient/public issues, reflects their views and meets theirhealth needs.
  5. 5. Patient involvement: when?Topic suggestionReferralScoping Patient/ public participation throughoutDevelopment development and implementationConsultationPublicationSupporting implementation
  6. 6. Patient involvement: how?• Direct input: membership of NICE advisory bodies (minimum 2, often 3, can be 6!)• Consultation with patient and voluntary organisations• Patient/carer experts (personal testimony)• Citizens Council (societal values)• Patient/public versions of NICE guidance
  7. 7. What information do patients and carers provide to NICE?• The personal impact of their condition• Outcomes patients want help with• The impact of treatment on outcome, symptoms, physical & social functioning, quality of life• Impact on family, friends and employers• Ease of use, side effects• Patient preferences• Subgroups who might benefit more/less from treatment• Challenges to professional or researcher views• Areas needing further research Patient evidence is most useful when presented as a summary that balances positive and negative views
  8. 8. Patient involvement - recruitment• Minimum of 2 lay members per development group• Payment offered• Open and transparent recruitment process - website• Anyone with an interest can apply – no formal qualifications or association with patient organisation needed• Formal job description/person specification• Equality data monitoring & conflict of interest forms• Works best with combination of patients, carers and those from organisations
  9. 9. Example of a patient ‘person specification’• No formal qualifications are needed• (In)direct experience of the condition• Understanding the views of a wider network (e.g. as a patient group member/employee)• Time to commit to group meetings• Familiarity with medical & research language• Communication/ team working skills• Not representing an organisation, or just one point of view
  10. 10. Patient involvement - support• Patient & Public Involvement Programme (PPIP) – advises NICE on methods for involving patients, carers and the public – identifies patient and community participants (organisations and individuals) – provides information, training and support to patients and lay people who engage with NICE (as individuals or organisations)
  11. 11. Patient involvement - training• Training tailored to involvement activities – setting clinical questions – different types of studies – appraising and evaluating evidence – „critical appraisal‟ exercise – key statistical terms – drawing up recommendations – health economics - why we need it – exercise using a cost-effectiveness case study• Opportunity to hear from past lay members• Follow-up training also offered towards end of development
  12. 12. Dissemination of guidelines to a lay audience• All clinical guidance produced in versions for patients and the public, known as “Understanding NICE Guidance”• Plain English translation of guidance, not detailed patient information• Includes key patient support organisations for further information
  13. 13. Collecting patients’ views - options• Formal analysis of rigorous qualitative research• Co-opted expertise and peer review• Focus groups (multiple sclerosis, heart failure, eating disorders, self-harm, violence)• Interviews (MS, self-harm, parent education)• Workshops (young people with diabetes, cancer in children and young people)• Patient conference surveys (lung cancer, cancer in children and young people)• Patient testimonials (most mental health guidelines)
  14. 14. Benefits of patient involvement• Patients have their own unique perspectives on - their condition - what constitutes good and poor care - the outcomes they want from treatment and care - risks, benefits and acceptability of treatment - preferences for treatment and management options - information and support needs• Guideline recommendations can address and integrate these to produce patient-centred guidance• Impact & added value……..
  15. 15. Impact - patient preferencesCase study – Antipsychotic drugs forschizophreniaEvidence showed little difference ineffectiveness between „newer‟antipsychotics.Service users told us that sideeffect profiles crucial to theirconcordance with antipsychoticdrug regimes.Recommendation to go withpatient preference, based on side effects
  16. 16. Impact – challenging clinical outcomesCase study – PsoriasisClinical research told usthe amount of psoriasis waswhat most affected thequality of life.Patients told us that thelocation of the flare-up (e.g.face or joints) was moresignificant.
  17. 17. Impact: questioning assumptionsCase study – Kidney dialysisCommittee assumedpatients would preferdialysis at home.Some patients told usthey disliked homemachines as it meanttheir illness dominatedtheir lives.
  18. 18. Impact: entirely new dataCase study – people whoself-harmDiscussions with serviceusers informed the guidelinedevelopment group thatpeople who self-harmedwere not routinely offeredanaesthesia for suturingwounds in the ED.Nothing in the publishedresearch to indicate this wasan issue.
  19. 19. Experience of care: information & decision-making needsCase study - high dose ratebrachytherapy for cervicalcarcinomaWomen who had had theprocedure told us it was bothdistressing and painful –nothing in the researchevidence to indicate thisGuidance explicitly includesrecommendations about painmanagement and counselling
  20. 20. Patient involvement - difficulties• Getting the „right‟ people• Attitudes of health professionals and academics• Managing expectations• Range of the scope• Patient evidence• Integration into the group• „Professional‟ patients• Groups not represented (children, people with learning difficulties etc.)• Language and jargon
  21. 21. Patient involvement – resolving difficulties• Explicit criteria on recruitment & conduct• Training for health professionals and academics; describing impact & added value• Significant preparation before group work starts• Clarity of what the guideline can, and cannot cover• Ensuring use of good quality patient data, such as• Formal and informal mechanisms for group integration• Ensuring fresh recruitment for each topic• Clarity about mechanisms for engaging with groups not at the table• Raising unacceptable or unclear terminology
  22. 22. Lay involvement in implementation• Role for both organisations and individuals• Low and high-level activities – promotion & awareness-raising of guideline – funding of posts• Incorporation of recommendations into other literature• Comparison of treatment against recommended practice• Commissioning and monitoring• Potential role for decision aids, and formal shared decision-making
  23. 23. Patient/public concerns with NICE• Lack of research evidence on patient/carer views, experiences and preferences• Quality of life measures often determined by professionals and don‟t reflect issues of most importance to patients• The weighting NICE places (or doesn‟t place) on evidence from patients and patient groups• Process doesn‟t take account of wider societal costs• Technical language and modelling are difficult to engage/challenge• NICE „blight‟/ variability in access to NICE recommended technologies/ Political priorities dominate
  24. 24. In the spotlight…
  25. 25. Guidance on ‘patients’ experiences’ – upcoming project• Guidance & quality standards – patients‟ experiences• Principles of good patient experience• Key areas: – communication – information – shared decision-making – Dignity – partnership – rights & responsibilities• Generic and mental health topics
  26. 26. Future for NICE & patient involvement?• Change in Government may mean different or new roles for NICE• Government rhetoric - „no decision about me without me‟• Measurable “Quality Standards” now form a significant part of NICE‟s future work: – clinical effectiveness – patient safety – patient experience• Social care (as well as clinical care) to be part of our remit• NICE will no longer be part of the NHS – what are the implications for patient involvement?
  27. 27. Thank youMore information:• Patient and public involvement at NICE:• Patient guidance collection: Contact the Patient and Public Involvement Programme:Email: