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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 Open the ORCID record for Ann N.V. Single [Opens in a new window] ,
Karen M. Facey ,
Heidi Livingstone  and
Aline Silveira Silva
Ann N.V. Single*
Affiliation:
Independent Consultant
Karen M. Facey
Affiliation:
Usher Institute of Population Health Sciences and Informatics, University of Edinburgh
Heidi Livingstone
Affiliation:
National Institute for Health and Care Excellence, London, United Kingdom
Aline Silveira Silva
Affiliation:
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: singlehaworth@gmail.com
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Abstract

Objectives

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.

Methods

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.

Results

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.

Conclusions

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.

Keywords

Patient involvementImpactTechnology assessment
Type
Article Commentary
Information
International Journal of Technology Assessment in Health Care , Volume 35 , Issue 4 , 2019 , pp. 266 - 272
Copyright
Copyright © Cambridge University Press 2019 

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Footnotes

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.

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