DEVELOPING EVIDENCE-INFORMED PATIENT ENGAGEMENT GUIDANCE FOR ECONOMIC EVALUATIONS (DEEP-ENGAGE): FINDINGS FROM A SCOPING REVIEW AND AN INTERNATIONAL SURVEY
Author(s)
Kednapa Thavorn, PhD1, Rebecca Mercer, PhD2, Min Xi, MSc3, Alyssa Grant, PhD4, Maureen Smith, NA5, Justin Presseau, PhD4, Dan Ollendorf, MPH, PhD6, Marina Richardson, PhD6, Alex Haines, BSc, MSc7, Ian D. Graham, PhD4, Brian Hutton, MSc, PhD4.
1Senior Scientist, Ottawa Hospital Research Institute, Ottawa, ON, Canada, 2Canadian Centre for Applied Research in Cancer Control, Toronto, ON, Canada, 3University of Toronto, Toronto, ON, Canada, 4Ottawa Hospital Research Institute, Ottawa, ON, Canada, 5Canadian Organization for Rare Disorders, Ottawa, ON, Canada, 6Institute for Clinical and Economic Review (ICER), Boston, MA, USA, 7CDA-AMC, Ottawa, ON, Canada.
1Senior Scientist, Ottawa Hospital Research Institute, Ottawa, ON, Canada, 2Canadian Centre for Applied Research in Cancer Control, Toronto, ON, Canada, 3University of Toronto, Toronto, ON, Canada, 4Ottawa Hospital Research Institute, Ottawa, ON, Canada, 5Canadian Organization for Rare Disorders, Ottawa, ON, Canada, 6Institute for Clinical and Economic Review (ICER), Boston, MA, USA, 7CDA-AMC, Ottawa, ON, Canada.
OBJECTIVES: Patient and public involvement is increasingly expected across health research, but there is little guidance on how to meaningfully engage patients in economic evaluations. DEEP-ENGAGE aims to develop evidence-based guidance for engaging patients, caregivers, and public partners throughout the economic evaluation process. We report interim findings from a scoping review and an international survey.
METHODS: Following Arksey and O'Malley and JBI guidance, we conducted a scoping review of patient engagement frameworks and case studies across complex health research initiatives, including clinical trials, health technology assessment (HTA), guideline development, core outcome sets, and research prioritization. Findings were synthesized by research stage. An international survey of health economists and HEOR researchers examined engagement practices, roles, recruitment, partner preparation, modelling activities, remuneration, and recognition using quantitative and qualitative analyses.
RESULTS: The review identified 39 engagement frameworks and 108 case studies, but only one framework specifically addressed economic evaluation. Existing frameworks emphasized sustained partnerships, while case studies demonstrated meaningful patient and public partner contributions to defining research questions, outcomes, eligibility criteria, intervention design, and model structure. Among 110 eligible survey respondents, 69 (63%) had engaged patients in economic evaluation. Engagement was concentrated at the consult (86%) and inform (63%) levels, with few reporting shared decision-making or empowerment (6%). Patient partners mostly contributed to scoping activities, including outcome selection (61%) and model structure (54%), but rarely participated in data analysis (2%). Major gaps included lack of remuneration (30%), limited attention to equitable recruitment (15%), and technical language as the leading barrier to engagement.
CONCLUSIONS: Patient engagement in economic evaluation remains fragmented and concentrated in the early stages of the process. Addressing these gaps is essential to improve the relevance, transparency, and legitimacy of evidence used in HTA and resource allocation. DEEP-ENGAGE will translate these findings into practical guidance to support meaningful patient engagement across the economic evaluation lifecycle.
METHODS: Following Arksey and O'Malley and JBI guidance, we conducted a scoping review of patient engagement frameworks and case studies across complex health research initiatives, including clinical trials, health technology assessment (HTA), guideline development, core outcome sets, and research prioritization. Findings were synthesized by research stage. An international survey of health economists and HEOR researchers examined engagement practices, roles, recruitment, partner preparation, modelling activities, remuneration, and recognition using quantitative and qualitative analyses.
RESULTS: The review identified 39 engagement frameworks and 108 case studies, but only one framework specifically addressed economic evaluation. Existing frameworks emphasized sustained partnerships, while case studies demonstrated meaningful patient and public partner contributions to defining research questions, outcomes, eligibility criteria, intervention design, and model structure. Among 110 eligible survey respondents, 69 (63%) had engaged patients in economic evaluation. Engagement was concentrated at the consult (86%) and inform (63%) levels, with few reporting shared decision-making or empowerment (6%). Patient partners mostly contributed to scoping activities, including outcome selection (61%) and model structure (54%), but rarely participated in data analysis (2%). Major gaps included lack of remuneration (30%), limited attention to equitable recruitment (15%), and technical language as the leading barrier to engagement.
CONCLUSIONS: Patient engagement in economic evaluation remains fragmented and concentrated in the early stages of the process. Addressing these gaps is essential to improve the relevance, transparency, and legitimacy of evidence used in HTA and resource allocation. DEEP-ENGAGE will translate these findings into practical guidance to support meaningful patient engagement across the economic evaluation lifecycle.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
PCR154
Topic
Economic Evaluation, Health Technology Assessment, Patient-Centered Research
Topic Subcategory
Patient Engagement
Disease
No Additional Disease & Conditions/Specialized Treatment Areas