Caregiver-Inclusive Value Initiative (CIVI)

Every day, more than 63 million caregivers in the U.S. provide unpaid, complex medical care to family members, friends, and neighbors. Yet their voices and experiences remain largely invisible in healthcare decisions, policies, and value assessments. The NAC’s Caregiver-Inclusive Value Initiative (CIVI) is changing that.

What is CIVI?

The Caregiver-Inclusive Value Initiative (CIVI) – powered by the National Alliance for Caregiving – is a learning network designed to catalyze a fundamental shift in how we measure healthcare value. CIVI will develop tools, resources, and spark collaborations across the healthcare ecosystem to create the systematic infrastructure required to capture the full ripple effect of illness and treatment on entire families. Instead of focusing solely on patients, CIVI expands the lens to include the full impact of illness and treatment on family caregivers.

The Challenge We’re Addressing

Despite growing recognition that caregiver data is essential for capturing the full societal impact of healthcare interventions, there is currently no standardized way to measure the caregiving experience or how it evolves with disease progression. This lack of consistent data leaves policymakers, insurers, and health systems without the insights they need to make informed, equitable decisions about the value of policies, interventions, and new medicines. It also represents a missed opportunity to incorporate caregiver data into Health Technology Assessments (HTAs), where such information could significantly influence evaluations of treatment value, cost-effectiveness, and broader societal outcomes.

Our Response

In collaboration with Stage Analytics and Genentech, NAC has established a Caregiver Impact Survey- a tool designed validated measures – to capture key dimensions of the caregiving experience, including financial strain, health effects, productivity loss, and time commitments. Designed for use by Patient Advocacy Groups (PAGs), the survey enables consistent and policy-relevant data collection. This unified data will support evaluations of caregiver support interventions, helping to assess their affordability, equity, and overall effectiveness, while informing healthcare and policy decisions.