Washington, D.C., October 27, 2016 – The Alliance for Aging Research (Alliance) announced today that it has been approved for a $250,000 Eugene Washington PCORI Engagement Award to create a first-ever Senior Patient and Family Caregiver Network (SP&FCN) by the Patient-Centered Outcomes Research Institute (PCORI). This network will address the significant underrepresentation of older adults and their family caregivers in patient-centered outcomes research (PCOR) and comparative effectiveness research (CER).
PCOR informs patients and their family caregivers how to better communicate with health care providers and subsequently make more informed health care decisions. CER directly compares existing health care interventions to determine which work best for specific patients and which pose the greatest benefits and harms.
“Older adults account for 36 percent of total U.S. personal health care spending and 42 percent of all prescription drug consumption and will make up 20 percent of the total population by 2030. Yet, the evidence base for treating older adults is sparse because they are underrepresented in clinical trials,” says Susan Peschin, MHS, president and CEO at the Alliance and the SP&FCN project lead. “The reasons range from a high likelihood of comorbidity exclusion in research protocols, to perceived financial issues and transportation challenges, to a fear of the science and the system. Engaging senior patients and their family caregivers will open a window into how such barriers impact access to effective treatments and services.”
The Alliance’s SP&FCN will focus on barriers researchers face to conduct PCOR/CER in Alzheimer’s disease, sarcopenia, which is age-related, progressive loss of muscle mass and strength; atrial fibrillation; and persistent pain and disability.
The main objective of the SP&FCN is to develop a patient/family caregiver-led nationwide cohort of advocates with:
- A basic knowledge and understanding of PCOR/CER.
- The skills to develop research questions meaningful to older adults with chronic disease and their family caregivers.
- The training necessary to partner with clinicians and researchers in developing and implementing PCOR/CER projects.
- The ability to provide the older adult patient perspective in key committees at the National Institutes of Health, the U.S. Food and Drug Administration, the Centers for Medicare & Medicaid Services, and other organizations in the research ecosystem.
The SP&FCN program will be overseen by an advisory council that includes older adult patients and family caregivers, as well as leading geriatrics, cardiology, neurology, and aging research experts and future potential project partners. The network and training will be designed and implemented by patients, stakeholders, and the health care community. This integrated team will then further support training of additional patients to fully participate in PCOR/CER.
The Alliance is partnering with Leidos Corporation for this project.
The project is part of a portfolio of projects approved for PCORI funding to help develop a skilled community of patients and other stakeholders from across the entire health care enterprise and to involve them meaningfully in every aspect of PCORI’s work.
“This project was selected for Engagement Award funding not only for its commitment to engaging patients and other stakeholders, but also for its potential to increase the usefulness and trustworthiness of the information we produce and facilitate its dissemination and uptake,” says Jean Slutsky, PCORI’s chief engagement and dissemination officer. “We look forward to following the project’s progress and working with the Alliance to share the results.”
The Alliance’s project and the other projects approved for funding by this program were selected through a highly competitive review process in which applications were assessed for their ability to meet PCORI’s engagement goals and objectives, as well as program criteria. For more information about PCORI’s funding to support engagement efforts, visit here.
About the Alliance for Aging Research
The Alliance for Aging Research is the leading nonprofit organization dedicated to accelerating the pace of scientific discoveries and their application in order to vastly improve the universal human experience of aging and health. Visit www.agingresearch.org for more information.
PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.