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Strengthening Value Assessment and Health Economics and Outcomes Research Proposals Through Patient Engagement:
Elizabeth F Franklin1, Benjamin M Craig2, Justin Hopkin3
1US Public Affairs & Patient Advocacy, Oncology, Sanofi, Washington, DC, USA.
Abstract:
Patient engagement in value assessment and health economics and outcomes research (HEOR) must be meaningful and authentic, not simply patient participation as study subjects. This article provides researchers with guidelines for incorporating patient engagement in value assessment and HEOR grant proposals. In the USA, the Patient-Centered Outcomes Research Institute (PCORI) offers six "foundational expectations" for partnerships in research: representative involvement, early and ongoing engagement, building capacity to work as a team, dedicated funds for engagement and partner compensation, meaningful inclusion in decision-making, and ongoing review and assessment. To these, we added two more expectations-informational exchange and mutual learning, and benefit to patients and involved groups-which emphasize the outcomes of active engagement. For each of the eight expectations, we provide recommendations that inform how research proposals can demonstrate them in the most appropriate manner. While including all eight expectations may not be feasible in every proposal, the framework encourages researchers to advance patient-centered research practices progressively. These guidelines aim to motivate researchers toward including more meaningful and authentic forms of patient engagement in their proposals, ultimately strengthening the quality and patient-centeredness of value assessment and HEOR projects, while fostering collaboration between researchers and patient communities.
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