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Stories of Patient Involvement Impact in Health Technology Assessments: A Discussion Paper

Published online by Cambridge University Press:  24 July 2019

Ann N.V. Single*
Independent Consultant
Karen M. Facey
Usher Institute of Population Health Sciences and Informatics, University of Edinburgh
Heidi Livingstone
National Institute for Health and Care Excellence, London, United Kingdom
Aline Silveira Silva
PhD candidate at University of Brasilia and technologist at National Committee for Health Technology Incorporation, Esplanada dos Ministérios, Brazil
Author for correspondence: Ann Single, E-mail:



As more health technology assessment (HTA) bodies seek to implement patient involvement, there is a desire to learn from other HTA bodies about their experiences and understand what approaches can be used and which ones make a real difference to HTA. This is difficult, as the impact of patient involvement in HTA is not well documented. This study aims to promote further discussion about the ways in which patient involvement can impact HTAs by studying stories of impact.


In a multi-stakeholder workshop, experts leading patient involvement in four HTA bodies shared examples of HTAs where they believed patient involvement made a difference, then they reflected on these impact stories within the wider context of impact evaluation.


The HTA bodies drew on patient input and patient-based evidence to inform their HTAs. The patient involvement was observed to elucidate patients’ experiences, needs and preferences which, in turn, was observed to influence the HTA recommendations about optimal use of technologies, including taking account of issues for sub-groups, outcomes that matter to patients and educational needs.


Personal stories of patient involvement may enable a wider understanding of different approaches to and impact of patient involvement. The examples relate to both patient input and patient-based evidence and highlight the role that patient involvement can play in reducing uncertainties and complementing the clinical and economic evidence in HTA. They suggest that impact can be seen in recommendations about how and when a technology is used.

Article Commentary
Copyright © Cambridge University Press 2019 

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The authors express their gratitude to Michelle Mujoomdar, Laura Weeks, and Sarah Berglas at CADTH for their contribution of the CADTH case study and constructive comments on drafts of this study. The authors are also indebted to Karen MacPherson and Naomi Fearns, Healthcare Improvement Scotland, and M. Sharmila A. Sousa, Oswaldo Cruz Foundation (Fiocruz) School of Governance in Health at the University of Brasilia, for reviewing and providing input on the Scottish and Brazilian case studies, respectively.


1.Facey, KM, Bertelsen, N, Wale, JL, et al. (2017) Reflections for future development. In: Facey, KM, Hansen, HP, Single, ANV, eds. Patient involvement in health technology assessment. Singapore: Springer Nature; p. 419426.CrossRefGoogle Scholar
2.Gagnon, MP, Dipankui, MT, DeJean, D (2017) Evaluation of patient involvement in HTA. In: Facey, KM, Hansen, HP, Single, ANV, eds. Patient involvement in health technology assessment. Singapore: Springer Nature; p. 201214.CrossRefGoogle Scholar
3.Weeks, L, Polisena, J, Scott, AM, et al. (2017) Evaluation of patient and public involvement initiatives in health technology assessment: A survey of international agencies. Int J Technol Assess Health Care 33, 715723CrossRefGoogle ScholarPubMed
4.Abelson J, Bombard, Gauvin F-P, Y, et al. (2013) Assessing the impacts of citizen deliberations on the health technology process. Int J Technol Assess Health Care 29, 282289.CrossRefGoogle ScholarPubMed
5.OHTAC Public Engagement Subcommittee (2015) Public engagement for health technology assessment at Health Quality Ontario—final report from the Ontario Health Technology Advisory Committee Public Engagement Subcommittee. Scholar
6.Berglas, S, Jutai, L, MacKean, G, et al. (2016) Patients’ perspectives can be integrated in health technology assessments: An exploratory analysis of CADTH Common Drug Review. Res Involv Engagem 2, 21.CrossRefGoogle ScholarPubMed
7.Health Technology Assessment international (HTAi) (2017). XIV HTAi 2017 Annual Meeting Rome, Italy: Towards an HTA ecosystem: From local needs to global opportunities. Scholar
8.Greenhalgh, T, Russell, J, Swinglehurst, D (2005) Narrative methods in quality improvement research. Qual Saf Health Care 14, 443449.CrossRefGoogle ScholarPubMed
9.Kristensen, FB, Sigmund, HP (2008) Health technology assessment handbook 2007 (2nd edition in English). Scholar
10.Healthcare Improvement Scotland (2015) Antimicrobial wound dressings for chronic wounds: Health technology assessment report 13. Scholar
11.Hielkema, L, Wessels, M (2014) Power to the patient: The development of a literature search filter for patients’ perspectives and preferences [conference proceedings]. Scholar
12.Health Improvement Scotland (2018) Understanding your chronic wound: Patient information leaflet (A5. Scholar
13.Canadian Agency for Drugs and Technologies in Health (CADTH) (2019) CADTH framework for patient engagement in health technology assessment. Scholar
14.Canadian Agency for Drugs and Technologies in Health (CADTH) (2016) Interventions for obstructive sleep apnea: Optimal use. Scholar
15.National Institute for Health and Care Excellence National Institute for Health and Care Excellence (NICE) (2016) HTA of TNF-alpha inhibitors for ankylosing spondylitis and axial spondyloarthritis. Scholar
16.National Institute for Health and Care Excellence National Institute for Health and Care Excellence (NICE) (2015) Appraisal consultation document – TNF-alpha inhibitors for ankylosing spondylitis and non-radiographic axial spondyloarthritis (including a review of TA143 and TA233) Scholar
17.Brazil (2011). Law n. 12,4011. Brasília: Federal Official Gazette of Brazil.Google Scholar
18.Silva, AS, Petramale, CA, Rabelo, RB, Santos, VCC (2017) Brazil. In: Facey, KM, Hansen, HP, Single, ANV, eds. Patient involvement in health technology assessment. Singapore: Springer Nature; p. 243246.CrossRefGoogle Scholar
19.National Committee for Health Technology Incorporation (CONITEC) (2016) Betainterferonas no tratamento da esclerose múltipla remitenterecorrente Scholar
20.National Committee for Health Technology Incorporation (CONITEC) (2016) Diretrizes de Atenção à Gestante: a operação cesariana Scholar
21.Menon, D, Stafinski, T, Dunn, A, et al. (2015) Involving patients in reducing decision uncertainties around orphan and ultra-orphan drugs: a rare opportunity? Patient 8, 2939.CrossRefGoogle ScholarPubMed
22.The International Network of Agencies for Health Technology Assessment (INAHTA) (2014) The Influence of Health Technology Assessment: A conceptual paper. Scholar
23.Hansen, HP, Lee, A, van Randwijk, CB (2011) Patient aspects: A review of fifty-eight Danish HTA reports. Int J Technol Assess Health Care 27, 330336.CrossRefGoogle ScholarPubMed
25.Rozmovitz, L, Mai, H, Chambers, A, et al. (2018) What does meaningful look like? A qualitative study of patient engagement at the pan-Canadian Oncology Drug Review: Perspectives of reviewers and payers. J Health Serv Res Policy 23, 7279.CrossRefGoogle Scholar