Health technology assessments (HTAs) are meant to inform health policy by taking account of all the potential impacts of using a health technology. In the 1990s, HTAs included rigorous research to produce patient-based evidence, and some supported participation of patient representatives to help focus HTA research and determine value. In the 2000s, HTAs became more closely linked to reimbursement decisions, focusing on clinical and cost effectiveness. Patient involvement should be tailored to the specific needs of each HTA. As the timeframe for HTAs has reduced, research to produce patient-based evidence has been replaced by input from patient groups. This places a burden on individuals and organizations that needs to be critically reviewed. Therefore, it is imperative that we clarify when patient involvement is likely to add value and support patients to provide their unique knowledge in the most optimal way to influence HTA decision making. To reduce the burden on patient groups, more must be done to encourage research to produce patient-based evidence early in technology development. Like clinical research, a programme of research should be carefully planned, with appropriate methodological rigor for each study, and all research should be published. For this, the development of quality standards for research to produce patient-based evidence may be needed. Patient involvement has inherent value. It should be focused, systematic and transparent, and evolve according to the experiences of all stakeholders. All countries or collaboratives that undertake HTA should consider how they can elicit the needs, preferences and experiences of patients to support creation of patient-centered healthcare policy.
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The authors are grateful to the patients and patient representatives who have given their precious time and valuable insights to the field of HTA over the past two decades. Their candid insights have changed the way we think and motivated us to continue to strive to improve patient involvement in HTA.
No funding was received for the preparation of this paper.
Conflict of interest
Karen Facey was paid an honorarium by Springer to be lead editor of the book on Patient Involvement in HTA. She has received fees from Novartis, UCB, Takeda, the International Plasma Protein Congress, Healthcare Improvement Scotland and the Active Citizens Network since January 2017 for work related to patient involvement in HTA. She has also received expenses from Eurordis and the International Society for Health Economics and Research (ISPOR) to attend meetings related to patient involvement in HTA. Nicola Bedlington’s organization, the European Patients Forum, receives grants from different corporate entities, as listed in annual reports (www.eu-patient.eu/library/Annual-Reports111/), in accordance with the European Patients’ Forum Framework for Cooperation (http://www.eu-patient.eu/globalassets/who-we-are/transparency/framework-for-cooperation-2014.pdf). Sarah Berglas is employed as a patient engagement officer at CADTH, a Canadian health technology assessment agency. Neil Bertelsen has been paid honoraria and consulting fees as part of his work as a consultant specializing in market access advice and patient involvement in healthcare decision making. These honoraria come from a mix of pharmaceutical industry and patient group sources. Ann Single was paid an honorarium by Springer to be co-editor of the book on Patient Involvement in HTA. She has a voluntary position with the Patient Voice Initiative in Australia. Victoria Thomas is a full-time employee of the National Institute for Health and Care Excellence (NICE), an HTA body.
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Facey, K.M., Bedlington, N., Berglas, S. et al. Putting Patients at the Centre of Healthcare: Progress and Challenges for Health Technology Assessments. Patient 11, 581–589 (2018). https://doi.org/10.1007/s40271-018-0325-5