Good practices in patient involvement in HTA
- 1. Karen Facey k.facey@btinternet.com @KMFacey Coordinator – HTAi Patient Involvement Methods and Impact Working Group http://www.htai.org/interest-groups/patient-and-citizen-involvement.html Good practices in patient involvement in HTA Are they being used?
- 3. Available in English, Spanish, Italian, Polish, Mandarin, Greek www.htai.org/interest-groups/patient-and-citizen-involvement/resources/for-patients-and-patient-groups.html
- 4. Patients’ and carers’ experiences • Living with an illness – ‘No one knows better what it is like to live with an illness day in, day out, than those who are doing this – the patients and their family and friends who care for them.’ Understanding HTA. Health Equality Europe. 2008 • Unique knowledge (“perspectives”) – Experiences (good and bad) of the health care system in terms of diagnosis, support for healthy living and treatment – Preferences, needs
- 5. How can patients get involved in HTA? • A patient’s view is an individual’s subjective experience - Is it representative? - Is it biased by industry influence? • How can patients’ and informal care-givers’ perspectives be combined with evidence from controlled clinical trials or complicated economic models of cost and benefit?
- 6. Patient participation in the HTA process Involvement at every stage: • Study design to produce evidence • HTA topic selection • Scoping of HTA to define research questions • Submission of evidence • Presentation of patient experience to expert committee • Sitting on an HTA decision-making committee • Consultation on recommendations • Development of patient friendly summaries • Dissemination/communication of HTA conclusions • Designing & reviewing patient engagement processes • Using HTA to inform charity investments • Contributing to governmental review of HTA
- 8. HTA and decision making • HTA can be considered as a bridge between scientific evidence and decision making • Patients’ perspectives can illuminate the HTA bridge by clarifying what matters to patients, which can help identify those most in need clarify determination of added value encourage stakeholders to collaborate to resolve uncertainties
- 10. European HTA activities England/Wales and Scotland • Implementing most Quality Standards in different ways • Continually seeking improvement • Only Scotland has HTAi Values and Quality Standards on its website
- 11. European HTA activities Italy • Annual 6-day training programme on HTA for patient and citizen advocates organised by Active Citizens Network
- 12. European HTA activities Germany • Large group of self-help (patient) groups that contribute to appraisals and can initiate research with help of HTA staff
- 13. Challenges • Balance of patient groups advocating for a specific disease vs fair allocation of resources for all users of healthcare • Adversarial approaches • Lack of resources (patient groups and HTA bodies) • Training – for HTA staff, experts and patients 13
- 14. The way forward • Taking a step on the patient involvement journey that suits local context • Embedding patient involvement from the outset in new HTA processes • Developing a roadmap for patient involvement in HTA • Well-trained patient representatives 14