Presentation (CTI)

OBJECTIVES: Integration of patient-centric approaches and the patient voice in evidence generation is increasingly recognised as essential for ensuring Health Economics and Outcomes Research (HEOR) reflects the real-world experiences, preferences, and outcomes that matter most to patients. Despite this, practical frameworks and solutions for meaningful patient involvement in HEOR remain underdeveloped and under recognised.
METHODS: A targeted literature search was conducted to identify published frameworks and methodologies that capture the patient voice during evidence generation, either via informing research design or via research participation. The identified methodologies were collated into a roadmap summarising the potential circumstances and optimisation of their use.
RESULTS: We developed a roadmap incorporating 20 approaches that capture the patient voice including early and sustained patient engagement to inform: research design, patient-led priority setting, co-development of patient-reported outcomes, patient preference studies, patient advisory boards, consensus-building methods, discrete choice experiments, interviews, focus groups, co-design workshops, mixed methods research, utility elicitation and model feedback through assumption evaluation and validation. The approach to patient involvement recommended depends upon the research objective and if patient perspectives are to inform study design, endpoint selection, model assumptions, or evidence interpretation. We provide considerations for how these methods can be adapted to indirectly capture patient perspectives via patient advocacy groups, caregivers and family members. The use of varied engagement approaches should also be considered to allow inclusion of traditionally under-represented groups.
CONCLUSIONS: Our practical roadmap provides a flexible set of solutions for adopting patient-centric approaches in evidence generation. By navigating these strategies, we can move toward a more inclusive, credible, and impactful paradigm ensuring that HEOR evidence in decision-making reflects the needs and values of all stakeholders.