Patient Involvement in Health Technology Assessment

This is the first book to offer a comprehensive guide to involving patients in health technology assessment (HTA). Defining patient involvement as patient participation in the HTA process and research into patient aspects, this book includes detailed explanations of approaches to participation and research, as well as case studies. Patient Involvement in HTA enables researchers, postgraduate students, HTA professionals and experts in the HTA community to study these complementary ways of taking account of patients’ knowledge, experiences, needs and preferences.

Part I includes chapters discussing the ethical rationale, terminology, patient-based evidence, participation and patient input. Part II sets out methodology including: Qualitative Evidence Synthesis, Discrete Choice Experiments, Analytical Hierarchy Processes, Ethnographic Fieldwork, Deliberative Methods, Social Media Analysis, Patient-Reported Outcome Measures, patients as collaborative research partnersand evaluation. Part III contains 15 case studies setting out current activities by HTA bodies on five continents, health technology developers and patient organisations. Each part includes discussion chapters from leading experts in patient involvement. A final chapter reflects on the need to clearly define the goals for patient involvement within the context of the HTA to identify the optimal approach.

With cohesive contributions from more than 80 authors from a variety of disciplines around the globe, it is hoped this book will serve as a catalyst for collaboration to further develop patient involvement to improve HTA.

"If you’re not involving patients, you're not doing HTA!" - Dr. Brian O’Rourke, President and CEO of CADTH, Chair of INAHTA

1. Health Technology Assessment.- 2. Exploring Ethical Rationales.- 3. Reflections on Terms, Goals and Organisation.- 4. Patient-Based Evidence in HTA.- 5. Developing the Mosaic of Patient Participation in HTA.- 6. Patient Input to HTA.- 7. Discussion - Attending to Values and Quality of Patient Involvement in HTA.- 8. Patients as Collaborative Partners in Clinical Research to Inform HTA.- 9. Developing Patient-Reported and Relevant Outcome Measures.- 10. Discrete Choice Experiments.- 11. Analytic Hierarchy Process.- 12. Ethnographic Fieldwork.- 14. Deliberative Methods to Involve Patients in HTA.- 15. Qualitative Evidence Synthesis.- 16. Evaluation of Patient Involvement in HTA.- 17. Discussion - Making Sense of Patients’ Perspectives, Experiences and Preferences in HTA.- 18. Discussion - Research to promote patient-based HTA.- 19. Australia.- 20. Brazil.- 21. Canada.- 22. Denmark.- 23. England.- 24. EUnetHTA – Patients’ Perspectives in the HTA Core Model®.- 25. Germany.- 26. Italy.-27. Scotland.- 28. Sweden.- 29. Taiwan.- 30. USA - Comparative Effectiveness Research.- 31. Discussion of Approaches in Different Countries.- 32. Discussion – Patient Participation in HTA; Evidence of Real Change?.- 33. Patient Involvement in Medicine Development and Assessment.- 34. Medical Technologies: Involving Patients in Development and Assessment.- 35. Role of Patient Organisations.- 36. Discussion - Perspective of an HTA Appraisal Committee Chair.- 37. Reflections for Future Development

Karen Facey PhD is an Honorary Research Fellow at the University of Edinburgh, Chartered Statistician, Honorary Member of the Faculty of Public Health and Fellow of the Royal Society of Medicine. She has worked as a statistician for pharmaceutical companies and the UK medicines regulatory agency. In 2000 she setup the first national health technology assessment (HTA) Agency in Scotland and since 2003 has been an independent consultant. She has been active in HTA International (HTAi) for the past decade, chairing its Policy Forum and was founding Chairperson of the HTAi Interest Group for Patient and Citizen Involvement in HTA. She is on the editorial board of several journals including The Patient and Research Involvement and Engagement. She has research interests in HTA policy, patient involvement and rare diseases. In 2014 she was named as one of the top 100 practising scientists in the UK for her work on HTA and patient wellbeing.