This extensively revised and updated Open Access book offers a comprehensive guide to involving patients in health technology assessment (HTA). Defining patient involvement as r esearch into patient aspects (patients' experiences, preferences, perspectives, needs) and patient participation in HTA (individual HTAs, methods, processes, governance and policy) it includes detailed explanations of methodologies and approaches, as well as case studies.

The book begins by introducing HTA and considering the ethics of patient involvement. It then defines the complementary strands of research and participation before providing chapters on key methods including: qualitative evidence synthesis, patient preference studies, ethnographic fieldwork, social media analysis using AI, natural language processing and deep learning, patient-led collaborative research to inform economic modelling, and evaluation of patient involvement. It concludes with carefully selected case studies highlighting specific approaches and considerations among HTA bodies on five continents, health technology developers and patient organisations.

With cohesive contributions from more than 120 authors from a variety of disciplines around the globe and most chapters including patient authors, Patient Involvement in Health Technology Assessment concludes with urgent calls to action for this field which has rapidly gained momentum in the past decade. As both a practical manual and academic text, it serves as a source of inspiration for policymakers, practitioners, researchers, patient advocates and postgraduate students around the world who seek to improve HTA by taking account of patients' knowledge, experiences, needs and preferences.

This book is open access, which means that you have free and unlimited access Provides comprehensive instruction on patient involvement in relation to Health Technology Assessment Provides academic, policy, HTA practice and patient organisation perspectives focussed on HTA Arranged into sections on policy foundation, case studies and methodology allowing readers to refine their understandin

Autorentext

Karen Facey, PhD, is a visiting senior research fellow at the University of Edinburgh, chartered statistician and honorary member of the Faculty of Public Health. She has worked as a statistician for pharmaceutical companies and the UK Medicines Regulatory Agency. In 2000, she set up the first national health technology assessment (HTA) agency in Scotland and since 2003 has been an independent consultant. She is a member of the Scottish HTA appraisal committee, the SUSTAIN-HTA consortium and the Myeloma Patients’ Europe Patient Evidence Research Advisory Committee. Karen has been active in HTA international (HTAi) for the past 20 years 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 and has research interests in HTA policy, patient involvement, rare diseases and real world data. In 2014, she was named as one of the top 100 practising scientists in the UK for her work on HTA and patient well-being.

Anke-Peggy Holtorf, PhD, MBA, is Director of Health Outcomes Strategies GmbH with focus on value of health technologies and related policy decisions, health technology assessment, outcomes research and health economics. She contributed to global projects including work in Low- and Middle-Income Countries or initiatives for involving patients along the technology lifecycle. Anke-Peggy acts as Secretary of the Board (2024-27) at Health Technology Assessment international (HTAi). She has published broadly on subjects related to evidence-based decision making and policies in healthcare or the methods for including the patient perspective in such decisions. As Steering Committee member and project coordinator for the Patient and Citizen Involvement in HTA Interest Group, she has co-led several projects (e.g., ‘Patient and Citizen Involvement in HTA in LMICs’, ‘360° Stakeholder Experiences with PI in HTA in Europe’, and ‘Patient Insight Research for HTA’). Anke-Peggy teaches as Adjunct Faculty at the University of Utah and as guest lecturer in other university programs.

Ann Single, MA, is the CEO of Patient Voice Initiative, a patient-led not for profit working to ensure patients are seen, heard and valued in healthcare decision-making, especially HTA. She’s worked in patient involvement in HTA for 25 years, first directing it within Scotland’s HTA agency and then sharing and developing good practice in HTAi’s Patient and Citizen Involvement Interest Group. From 2019-2023, she chaired this Interest Group and is now its Outgoing Chair and HTAi’s first President (2025-27) from the patient community sector. Ann is a faculty member of the International Patient Advocacy Management Masters Course at Università Cattolica del Sacro Cuore and a member of Rare Voices Australia’s Scientific and Medical Advisory Committee. She served as a Reference Committee member on the Australian Government’s HTA Policy and Methods Review (2022-2024). With a background in government and patient organisations, her focus is improving health outcomes by integrating patients and their knowledge in healthcare decisions.

Inhalt

I-Conceptualisation.- Health Technology Assessment.- Justice as an Ethical Justification for Patient Involvement.- Research into Patient Aspects.- Patient Participation in HTA.- Discussion: Patients' Role, Representation and Epistemic Justice in HTA.- II-Methodologies.- Patient-led Collaboration for HTA Tools and Evidence Development: Project HERCULES.- Extracting Data on Patient Perspectives from Social Media.- Discussion: The Evolving Science of Patient Involvement.- Patient Preference Research to Inform HTA.- Ethnographic Fieldwork.- Qualitative Evidence Synthesis.- Evaluation of Patient Involvement in HTA.- Discussion: Making Sense of Patients' Perspectives, Experiences, and Involvement in HTA..- III-Jurisdictional Approaches and Stakeholder Views.- Australia: Co-Designing Enhanced HTA Processes with Patients.- Belgium: Partnering with Patients for HTA Research.- Czechia: Patient Involvement in HTA.- England: Continuously Improving Processes for Patient Involvement Throughout HTA.- European Union: Patient Involvement Model in HTA Under the European HTA Regulation.- Germany: Patient Involvement in HTA.- Latin America and the Caribbean: Evolving Approaches to Involving Patients in HTA.- The Philippines: Systematising Patient Participation in HTA.- Republic of Korea: Tackling Misinformation with Patients in HTA.- Singapore: From Stakeholder Mapping to Continuously Improving Patient Participation in HTA.- Spain (REDETS): Collaborating on Methodologies for Patient Involvement in HTA.- Taiwan: Patient Participation in HTA.- USA: Patient Involvement at the Institute for Clinical and Economic Review.- Wales: Developing Bespoke Approaches to Patient Involvement in HTA.- Perspectives from Low- and Middle-Income Countries on Patient Involvement in HTA.- Discussion: Perspective of an HTA Appraisal Committee Chair in France.- The Evolving Role Patient Organisations in HTA.- Patient Involvement Throughout the Medicine Life Cycle: A Pharmaceutical Industries' Perspective.- Patient Involvement in the Life Cycle of Medical Technology Development.- Patient Involvement in HTA The Journey Continues.