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Jornadas #PatientInHTA · Valentina Strammiello

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Presentation in the framework of the International Conference "10th anniversary of the Spanish Network of Health Technology Assessment Agencies. Towads patient and public engagement in HTA" Zaragoza 27-28 April 2017

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Jornadas #PatientInHTA · Valentina Strammiello

  1. 1. Zaragoza, 27-28 April 2017 A patient perspective on HTA involvement Valentina Strammiello Programme Managerr PUBLIC HEALTH CONFERENCE 10th anniversary of the Spanish Network of Health Technology Assessment (HTA) Agencies: Insights for collaborative networking Towards Patient and public engagement in HTA
  2. 2. European Patients’ Forum: • Umbrella organisation • active since 2003 • 74 member organisations Mission “To ensure that the patient community drives health policies and programmes that are adapted for their final users, patients.” EPF’s vision is high-quality, patient-centred, and equitable health and social care for all patients across the EU. GOAL #2 To contribute to improvements in health systems that enable equitable access to sustainable and high-quality healthcare designed and delivered to meet patients’ and informal carers’ needs at all levels of care, embracing innovation in all its forms About EPF
  3. 3. Helicopter view of patient involvement in HTA in other European HTA agencies or (should be working) Who and how is involved or should be involved, in which stages of the HTA Main difficulties and challenges faced in patient engagement in HTA for a proper patient participation and how they could be addressed Overview of my presentation
  4. 4.  Availability of funds/affordability  NHS system (full universal coverage? Bismarckian? Beveridge?)  Who conducts the assessments? Who decides?  Some MS have independent review bodies, others have entities under government mandates No standard methodology at EU level (yet)  Technologies considered for HTA (pharma products and/or medical devices, procedures etc) Helicopter view of patient involvement in HTA in other European HTA agencies = chronic condition ≠ treatments
  5. 5. Who did it first in Europe? France and Spain Started in the early ’80 • Since 2016 France –through HAS (Haute Autorité de Santé)- has started a pilot project on patient involvement in HTA • In a questionnaire patients assess whether treatments meet their expectations, report how they cope with their conditions, and impact on quality of life • The project focuses on selected conditions • So far results seems not to be optimal for patient organisations
  6. 6. Institute for Quality and Efficiency in Health Care (IQWiG) (assessments) Federal Joint Committee- G-BA (appraisals) Procedures: inclusive priority setting G-BA sub-committees appraise evidence (patients* included, but no voting rights) • G-BA board issues binding decision for sickness funds • If patient representative’s position differs from the board’s decision, this is noted in final documentation and they may take part in press conference to explain their position *Nominated by national umbrella organisation of self-help groups – pool of approximately 300 Who claims they do it better Germany
  7. 7. • IQWiG generally invites patient reps to provide input, mainly when patient-relevant outcomes are defined for a protocol • Anyone can submit comments on IQWiG draft protocols and draft reviews during 4-week consultation period • GBA makes open requests for evidence on website and posts to stakeholders (including patient organisations) allowing 1 month for submission Patient input in Germany
  8. 8. • NHS Centre for Reviews and Dissemination (Assessments) • National Institute for Health and Clinical Excellence (Appraisals) – Patient involvement units • Scottish Medicines Consortium (SMC) – Decision making Committees – Involvement of lay citizens/ patient representatives – National policy that patients must be involved in healthcare decision-making – SMC Patient & Public Involvement Group (PAPIG) – Development of submission form for patients – Public Involvement Officer supports evidence submissions and provides feedback – Plain English explanations of SMC process Who does it better? UK- England and Scotland
  9. 9. Rationale: lack of resources to ensure patients access to innovative technologies Countries involved: – Bulgaria (lead), Croatia, Hungary, Romania, Slovakia • But in the future also: Bosnia and Herzegovina, Macedonia, Serbia, Slovenia – Who is involved in the Think Tank: • Experts, medical doctors, pharmaco-economists, and representatives from patient associations A bottom up regional initiative in Eastern Europe Central Eastern Europe Think Tank on Patient Access-CEE TTPA
  10. 10. • HTA Network Patient and Consumer Stakeholder Pool • Patients organisations collaborating with EUnetHTA • EPF informal Working Group on HTA • HTAi PCIG-Patient Panel Patients actions at EU/international level
  11. 11. Who and how is involved or should be involved, in which stages of the HTA
  12. 12. Patient involvement in HTA • Scoping • Prioritisation • Assessment • Follow up • Role of patient organisations and individual patients • not a thick the box exercise
  13. 13. Patient involvement in the HTA life cycle
  14. 14. • Time • Language • Patients perceived as a burden /passive actor • Involve and inform about the full life cycle • Education • Build connection with patient organisations Challenges faced in patient engagement in HTA for a proper patient participation
  15. 15. /europeanpatientsforum /eupatientsforum More information www.eu-patient.eu info@eu-patient.eu THANK YOU FOR YOUR ATTENTION! Follow us on Social Media! /eupatient eu-patient.eu/blog