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Enhancing Rare Disease Commissioning: Patient-Centered Approach

Explore challenges and solutions in rare disease commissioning, emphasizing patient and family inputs for integrated, equitable care provision. Learn about Genetic Alliance UK's initiatives and future strategies. Contact alastair@geneticalliance.org.uk for more information.

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Enhancing Rare Disease Commissioning: Patient-Centered Approach

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  1. The Rare Disease Plan.Commissioning for Patients Alastair Kent Genetic Alliance UK

  2. Looking Back • A lottery • Variation between different parts of the country • Variation between diseases • What can we get away with, not what is needed • Reactive • Fragmented

  3. Patient and Family Expectations • Clarity • Equity – geographical and between diseases • Robustness • Transparency • A say in the process • Integrated provision • Respect

  4. The NHSCB • An opportunity • Development of a single national standard of service (delivered appropriately) • Patient and family input • Standards • Integration – between clinicians and between central and local elements of care provision • Systematic innovation

  5. The Challenge • Absence of consensus about care pathways • Pace of change • Securing meaningful patient input • Integrating central and local provision • Monitoring and evaluation – making contract compliance and patient expectations match up

  6. Patient Inputs • Genetic Alliance UK “Family Route Maps” and Citizens Jury as examples of real patient led development • Membership of CRGs • Contribution to development of SSCIF • Leadership role in developing proposals for a National Plan for Rare Diseases • Etc.

  7. Challenges • Financial pressures – leveling down not up • Institutional separation • Resistance to change (and conversely, technological imperativism) • Skill shortages (clinical and commissioning) • Sustaining trust across stakeholder groups

  8. Looking Ahead • Go for the low hanging fruit first (eg adding clinical expertise to UKGTN outputs) • Build in sunset clauses to allow systematic review and evaluation • Beware the MoD model – forward facing investment • Do not neglect CME/CPD

  9. Questions?Thank you for listening alastair@geneticalliance.org.uk www.geneticalliance.org.uk www.raredisease.org.uk

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