Patient Involvement in Health Technology Assessment: A Global Review of Practices, Purposes, and Pathways
Author(s)
Vittoria Ardito, MSc1, Marta Bragagnolo, MSc2, Neil Johnson, BA; MA2, Monica Otto, PhD1, Rosanna Tarricone, PhD3.
1Center for Research on Health and Social Care Management (CERGAS), SDA Bocconi School of Management, Milano, Italy, 2Global Heart Hub, Galway, Ireland, 3Department of Social and Political Sciences, Bocconi University, Milano, Italy.
1Center for Research on Health and Social Care Management (CERGAS), SDA Bocconi School of Management, Milano, Italy, 2Global Heart Hub, Galway, Ireland, 3Department of Social and Political Sciences, Bocconi University, Milano, Italy.
OBJECTIVES: While the relevance of incorporating patient perspectives in health technology assessment (HTA) has long been recognized, significant heterogeneity persists across jurisdictions in both the extent and the modalities of such involvement. This study aimed to systematize existing evidence on how patients are engaged throughout the HTA process.
METHODS: We conducted a structured review of the literature using PubMed and Web of Science, including peer-reviewed contributions published in English from database inception through present day. Additionally, grey literature was screened, including documents and reports from HTA agencies’ websites. Studies were included if they provided objective descriptions of the processes and practices through which patients are involved in various stages of HTA.
RESULTS: The selected contributions were analyzed along five interrelated dimensions that characterize patient involvement in HTA. The types of individuals or groups engaged ranged from patients with lived experience to broader lay communities. The purposes of their involvement were also diverse, namely informing policy, contributing to governance, or shaping research priorities. The level of engagement varied widely, from passive information sharing to more active roles in deliberation and decision-making processes. Mechanisms for operationalizing involvement were diverse, encompassing formal tools (advisory boards) and more informal consultations. Timing also differed, with some jurisdictions involving patients early (topic selection and scoping), while others included them at later stages (evidence appraisal or recommendation formulation).
CONCLUSIONS: Findings underscore the fragmented and evolving nature of patient involvement in HTA across contexts, revealing substantial heterogeneity across countries in the maturity and institutionalization of patient involvement practices, highlighting uneven progress in embedding these approaches within HTA systems. To build on this work, a global survey targeting patient organizations will be conducted through the Global Heart Hub network. Large-scale, systematic initiatives such as this are pivotal to strengthen both the methodology and the depth of patient involvement in HTA-related decision-making.
METHODS: We conducted a structured review of the literature using PubMed and Web of Science, including peer-reviewed contributions published in English from database inception through present day. Additionally, grey literature was screened, including documents and reports from HTA agencies’ websites. Studies were included if they provided objective descriptions of the processes and practices through which patients are involved in various stages of HTA.
RESULTS: The selected contributions were analyzed along five interrelated dimensions that characterize patient involvement in HTA. The types of individuals or groups engaged ranged from patients with lived experience to broader lay communities. The purposes of their involvement were also diverse, namely informing policy, contributing to governance, or shaping research priorities. The level of engagement varied widely, from passive information sharing to more active roles in deliberation and decision-making processes. Mechanisms for operationalizing involvement were diverse, encompassing formal tools (advisory boards) and more informal consultations. Timing also differed, with some jurisdictions involving patients early (topic selection and scoping), while others included them at later stages (evidence appraisal or recommendation formulation).
CONCLUSIONS: Findings underscore the fragmented and evolving nature of patient involvement in HTA across contexts, revealing substantial heterogeneity across countries in the maturity and institutionalization of patient involvement practices, highlighting uneven progress in embedding these approaches within HTA systems. To build on this work, a global survey targeting patient organizations will be conducted through the Global Heart Hub network. Large-scale, systematic initiatives such as this are pivotal to strengthen both the methodology and the depth of patient involvement in HTA-related decision-making.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
PCR171
Topic
Health Technology Assessment, Patient-Centered Research
Topic Subcategory
Patient Engagement
Disease
No Additional Disease & Conditions/Specialized Treatment Areas