Family Caregivers as Advocates

This presentation discusses the growing influence of family caregiver advocacy and its prospects for impacting policy under the Biden administration, at both the federal and states levels. In particular, it will describe the National Alliance for Caregiving’s 50-state unified strategy for establishing the caregiver support infrastructure that is needed to coordinate efforts and to support caregivers across the nation and the lifespan. Historically, family caregivers have had difficulty acting as effective advocates, given the multiple roles they often play and their widely divergent interests, based on the varying needs of their care recipient and their divergent life circumstances. However, the Biden administration has indicated receptivity to caregiver issues, and the public has become increasingly aware of the caregiver role (in part, due to the pandemic), resulting in improved prospects for policy action at both the state and federal levels. This presentation reviews recent developments and discusses strategies for moving forward.

Efforts by the National Alliance for Caregiving

The National Alliance for Caregiving (NAC) conducts research, does policy analysis, develops national best-practice programs, and works to increase public awareness of family caregiving issues. In addition to national research and advocacy, NAC provides technical assistance to a national network of caregiving coalitions representing nearly 30 states. NAC recognizes that family caregivers provide important societal and financial contributions toward maintaining the well-being of those in their care. The need to support the nation’s nearly 53 million family caregivers and sustain them as the backbone of our chronic and long-term care system is a central issue in national and state efforts to reform healthcare, especially in light of the challenges presented by the COVID-19 pandemic. This presentation will provide information on the current status of these national and state efforts.

What are the most important unanswered research questions on rapid review methodology? A James Lind Alliance research methodology Priority Setting Partnership: the Priority III study protocol

Background: The value of rapid reviews in informing health care decisions is more evident since the onset of the coronavirus disease 2019 (COVID-19) pandemic. While systematic reviews can be completed rapidly, rapid reviews are usually a type of evidence synthesis in which components of the systematic review process may be simplified or omitted to produce information more efficiently within constraints of time, expertise, funding or any combination thereof. There is an absence of high-quality evidence underpinning some decisions about how we plan, do and share rapid reviews. We will conduct a modified James Lind Alliance Priority Setting Partnership to determine the top 10 unanswered research questions about how we plan, do and share rapid reviews in collaboration with patients, public, reviewers, researchers, clinicians, policymakers and funders.