Table of Contents

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

About the Author

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.

Helle Ploug Hansen, PhD, MA isprofessor in humanistic rehabilitation research, the University of Southern Denmark, Department of Public Health, Denmark. She holds a Ph.D. degree and an extended master degree in Anthropology from the University of Copenhagen. She has been active within the field of HTA since 2001, and among other things been the author of several chapters in the Danish Handbook of HTA. Furthermore Hansen has edited a special issue in the International Journal of Technology Assessment in Health Care together with Karen Facey. She has conducted several ethnographic fieldwork studies in Denmark addressing psycho-social and rehabilitative aspects related to men and women with cancer. She has published several books and many peer-reviewed articles. She is visiting professor in nursing at a rehabilitation hospital in Oslo, Norway.

Ann Single, B.Bus (Journalism) MA (Writing), specialises in patient involvement and communication. She has been an active member of the HTAi InterestGroup for Patient and Citizen Involvement in HTA for the past decade and a lay reviewer for several journals. She has previously worked as the director of communication and patient involvement at the Health Technology Board for Scotland, managed science engagement programmes in Australia, and served as secretary for a patient group. She has contributed to a variety of papers on patient involvement and tools for patient participation including compiling a glossary of HTA terms for patients. She is interested in storytelling, especially what can be learnt from the stories of patients and care-givers.