Session (CTI)

Despite contributing an estimated $600 billion in unpaid labor annually, caregivers remain underrepresented in health technology assessments (HTAs) and health policy frameworks. This workshop aims to describe key gaps and propose actionable solutions to systematically integrate caregiver impacts into HTA and policy decisions, based on results from a landscape review and the outputs from a recent, iterative, multi-stakeholder deliberation process. R. Brett McQueen will summarize the outputs from the multi-stakeholder deliberation, revealing stakeholder-prioritized caregiving data and voting results, highlighting economic and longitudinal evidence most useful for current decision-making contexts (10 mins). Stacey Kowal will present how validated tools, such as the Zarit Burden Interview, Caregiver Reaction Assessment, Work Limitations Questionnaire, and Short-Form Health Survey, can produce relevant evidence across disease severity stages that is fit for purpose for health policy and HTA (10 mins). Lori Frank will outline the opportunities and challenges for collecting caregiver impact data through patient advocacy organizations along with feasible options for broadening collection of these data (10 mins). Audience participation will include live polling to understand experiences with collecting caregiver impact data and priorities for future evidence generation. This workshop will be valuable for a broad coalition of stakeholders interested or currently using caregiver impact data including but not limited to: policymakers strengthening caregiver support and guiding funding; Prescription Drug Affordability Boards and HTA bodies incorporating caregiver evidence into deliberations; employers and advocacy groups enhancing workplace policies and protections in support of caregivers; and researchers embedding caregiver outcomes in economic models.