Patient Involvement in Health Technology Assessment

1. Front Matter

   Pages i-xxvi

   PDF

2. Conceptualisation

   1. Front Matter

      Pages 1-1

      PDF

   2. Health Technology Assessment

      • Karen M. Facey

      Pages 3-16

   3. Exploring Ethical Rationales

      • Lars Sandman, Kenneth Bond, Björn Hofmann

      Pages 17-29

   4. Reflections on Terms, Goals and Organisation

      • Helle Ploug Hansen, Jackie Street

      Pages 31-42

   5. Patient-Based Evidence in HTA

      • Sophie Staniszewska, Sophie Werkö

      Pages 43-50

   6. Developing the Mosaic of Patient Participation in HTA

      • Karen M. Facey

      Pages 51-66

   7. Patient Input to HTA

      • Karen M. Facey, Ann N. V. Single

      Pages 67-79

   8. Discussion: Attending to Values and Quality of Patient Involvement in HTA

      • Vikki A. Entwistle, Stacy M. Carter

      Pages 81-86

3. Methodologies

   1. Front Matter

      Pages 87-87

      PDF

   2. Patients as Collaborative Partners in Clinical Research to Inform HTA

      • Maarten de Wit, Laure Gossec

      Pages 89-102

   3. Developing Patient-Reported and Relevant Outcome Measures

      • Kirstie L Haywood, Maarten de Wit, Sophie Staniszewska, Thomas Morel, Sam Salek

      Pages 103-120

   4. Discrete Choice Experiments

      • Antje Tockhorn-Heidenreich, Mandy Ryan, Rodolfo Hernández

      Pages 121-133

   5. Analytic Hierarchy Process

      • Marion Danner, Andreas Gerber-Grote

      Pages 135-147

   6. Ethnographic Fieldwork

      • Tine Tjørnhøj-Thomsen, Helle Ploug Hansen

      Pages 149-163

   7. Deliberative Methods to Involve Patients in HTA

      • Jackie M. Street, Edilene Lopes

      Pages 165-173

   8. Analysis of Social Media

      • Jackie Street, Lucy Farrell

      Pages 175-185

   9. Qualitative Evidence Synthesis

      • Andrew Booth

      Pages 187-199

   10. Evaluation of Patient Involvement in HTA

       • Marie-Pierre Gagnon, Mylène Tantchou Dipankui, Deirdre DeJean

       Pages 201-213

   11. Discussion: Making Sense of Patients’ Perspectives, Experiences, and Preferences in HTA

       • Pascale Lehoux, Jaime Jimenez-Pernett

       Pages 215-224

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 partners and 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

• Health policy
• Patient experience
• Patient participation
• Patient perspectives
• Pharmacoeconomics
• Qualitative research

• No. 9 Bioquarter, Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Edinburgh, United Kingdom

  Karen M. Facey

• Department of Public Health, Research Unit of General Practice, University of Southern Denmark, Institute of Public Health, Odense, Denmark

  Helle Ploug Hansen

• Patient and Citizen Involvement Interest, HTAi, Ashgrove, Australia

  Ann N.V. Single

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 is professor 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 Interest Group 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.