1. Workshop The science and methodologies behind HTA, diversity and commonality across the EU Achieving more patient centred HTA in different countries

2. Health Technology Assessment (HTA) HTA is a multidisciplinary process that summarises information about the medical, social, economic and ethical issues related to the use of a health technology in a systematic, transparent, unbiased, robust manner

3. Rationale for HTA There are increasing expectations of what healthcare is available/provided Increasing demands on available budgets Decisions on what should be made available should be rational based on all available evidence – which, of course, includes patient provided evidence

4. Evidence used in HTA Clinical trials –Efficacy –Quality of life Economic evaluations Modelling

5. Patients’ involvement : Clinical trials Get involved in the design of clinical trials so they measure what is important to patients (How ? When ?) Ensure trial populations are broadly relevant Help put the results of trials into the context of a patient’s life

6. Health related quality of life Help develop and test QOL tools so they reflect what matters to patients (EQ5D/fatigue) Try to ensure that disease specific tools are developed and validated –Reflect changes in priorities for patients at different stages of illness Think about carers quality of life

7. Economic evaluations Cost –Incremental cost effectiveness ratio (ICER) –Cost utility analysis Cost per quality adjusted life year (QALY) –Disability adjusted life year (DALY) (patient advocates need to fully understand those concepts and tools in order to be able to criticize and propose improvement)

8. How is patient evidence incorporated into HTA? Patient input to trials Patient input to assessment reports Patient evidence Reviewing recommendations Making recommendations available in plain language

9. Challenges of involving patients in research Contribution hindered by difficulties with access and communication Relationship (doctor supremacy, fear of preferential care) Anxieties of new role – unclear about role and ability to contribute, perceived value of contribution, not appearing foolish, lack of familiarity with technical terms Hewlett et al, 2006

10. Patient evidence Quantitative –Questionnaires/surveys –Patient Organisation databases Qualitative –Individual interviews –Focus groups discussions and interviews –Futures workshops –Blogs, etc

11. 3 fundamental issues affecting theme Resources = time, money, expertise (both for patients and HTA bodies) Data (in many countries exists very weak data collection) The impact of HT in question on daily life of the patient in his specific environment

12. 3 fundamental issues affecting theme Definition and assessment of quality of life in the patients’ specific environment Stopping of ineffective existing treatment via HTA Clinical assessment on EU level or on National level ?

13. 3 core recommendations Find a mechanism to exchange HTA specific experiences among participating patients Training HTA agencies on how to involve patients’ experts and why EPF propose qualifications and expertise needed to act meaningfully

14. 3 core recommendations