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.

Reimagining Clinical Trial Recruitment Through a Family-Centered Lens: Caregiver Recommendations for Enhancing Clinical Trial Participation Diversity

The National Alliance for Caregiving is proud to release a new report, Reimagining Clinical Trial Recruitment Through a Family-Centered Lens: Caregiver Recommendations for Enhancing Clinical Trial Participation Diversity.

Recognizing the value – the contributions, the expertise, the health impact – of what caregivers do, as partners in innovation, is a key part of creating a more equitable, person and family-centered health care system. NAC’s report Reimagining Clinical Trial Recruitment Through a Family-Centered Lens details the proceedings of a series of three roundtables with diverse caregivers and clinical trial experts resulting in co-developed recommendations for enhancing clinical trial diversity by better engaging family caregivers most impacted by structural inequities. This report was developed with collaboration from Health Leads, and builds on information found in NAC’s 2019 report, Paving the Path for Family-Centered Design: A National Report on Family Caregiver Roles in Medical Product Development.

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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