Medical Product Development

Family Caregiver Roles in Research Innovation

National Alliance for Caregiving Innovation Photo

Although families and caregivers are essential partners in the delivery of health care and have valuable perspectives, their roles are not well incorporated in health care systems. NAC aims to leverage caregivers’ expertise and observations about the conditions their care recipients experience and associated health outcomes to inform all stages of medical product development. Caregivers can often provide remarkable and pivotal insights into what drugs and devices are needed, what therapeutic benefits matter and how much, what degree of risk or potential harms are tolerable, how clinical research should be conducted, and how safety and efficacy should be measured.

In partnership with the LEAD Coalition, NAC published a first-of-its-kind report Paving the Path report addressing how to incorporate the critical knowledge of caregivers in the development of pharmaceutical products, biologic therapies, diagnostics, and medical devices.

Paving the Path for Family-Centered Design: A National Report on Family Caregiver Roles in Medical Product Development

In this report, NAC, in partnership with Leaders Engaged on Alzheimer’s Disease (LEAD) Coalition, explores the vital roles that family caregivers can play in shaping biomedical research and development, regulatory decision-making, and healthcare delivery. Paving the Path captures perspectives from more than 40 stakeholder groups and includes these topics: defining today’s caregivers and caregiving activities; roles for caregivers in patient-focused drug development; and actions to increase caregiver engagement in the drug and device development process.

A two-page brief of this report is also available, offering highlights from the November 2018 summit and insights for innovators.

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