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Patient Involvement in Pain Guidelines

Patient Involvement in Pain Guidelines. Judy Birch Pain Alliance Europe NHS Evidence Accreditation Advisory Committee. Disclosure Statement of Financial Interest.

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Patient Involvement in Pain Guidelines

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  1. PatientInvolvement in Pain Guidelines Judy Birch Pain Alliance Europe NHS Evidence Accreditation Advisory Committee

  2. Disclosure Statement of Financial Interest I, Judy Birch, DO NOT have a financial interest/arrangement or affiliation with one or more organizations that could be perceived as a real or apparent conflict of interest in the context of the subject of this presentation.

  3. Background to patient involvement in policy Active Citizenship Network (ACN): “Charter of Patients Rights”: Right to participate in policy-making in the area of health International Alliance of Patients Organizations (IAPO) policy statement and guidelines on patient involvement Health and Social Care Act 2008, 2012

  4. IAPO Policy statement: • Patient involvement should occur whenever decisions are being discussed which will affect patients’ healthcare or lives including, but not restricted to, the following areas: • Education and training programmes design ( for health professionals ) • Research priorities and development • Care and treatment guidelines

  5. Guideline case study • Guidelines case study: PPSN/WFIP • Guideline development bodies • Referred to the AGREE Instrument and IAPO policy statement and guidelines on patient involvement ( add link/wording) • Ongoing involvement, patients are EQUAL participants,record results and act upon them to implement changes.

  6. Pain Policy • Paul Burstow MP, Minister of State for Care Services announced the following statement: • “ The Department recognizes chronic pain as a long term condition, either in its own right or as a component of other long-term conditions. Everyone who suffers persistent pain should have a timely assessment in order to determine the cause of pain- if a cause can be determined- and to advise on options for treatment, including self-help. Patients with refractory chronic pain will benefit from the care-planning approach, but decisions should be taken on an individual basis depending on the severity of symptoms and any co-morbidities”

  7. NICE, Patient Involvement and Pain • NICE Quality Standard ( a number of statements about the care a patient can expect ) and a guideline for pain management • Patients and patient organization representatives are invited to participate at the outset and throughout the guideline development process. ( Scoping, development, consultation, publication and implementation ) • Comment on draft guidance by registered stakeholders ( eg patient experience guidance: pain ) All comments are responded to in writing • Application process for patient/lay membership of the Guidance Development Group (GDG)

  8. Patient/carer/public concerns with NICE’s processes: • 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 • Process doesn’t take account of wider societal costs

  9. NHS EvidenceAccreditation • AGREE Domain 2: Stakeholder involvement: • 2.1 Individuals from all relevant stakeholder groups including patients groups in developing guidance • 2.2 Patient and service user representatives and seeks patients views and preferences in developing guidance

  10. NHS EvidenceAccreditation • Who ? patient representative/patient/carer ( application process, attendance fee/honorarium ) • What ? what are you asking to be done, what support • When ? from the outset • How ? focus groups, surveys, personal experience, on guideline group ( attendance fee/honorarium ) Monitor • Why ? is it to tick a box ??

  11. The European context • Inclusive : Countries, age, gender, disease area/all aspects of pain/parts of the body should be taken into account. • We hope that this work will lead to pain being covered more thoroughly in better quality guidelines for specific conditions where pain is a symptom of a condition and also to guidelines for chronic pain in its own right. • Similarly, patient input into health professional education, curriculum, continuing medical education on chronic pain • Patient input into research and research priorities on chronic pain

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