The Alliance for Aging Research (the Alliance) is the leading nonprofit organization dedicated to accelerating the pace of scientific discoveries and their application to vastly improve the universal human experience of aging and health. The Alliance’s proposed Senior Patient & Family Caregiver Network (SP&FCN) will focus on Alzheimer’s disease (AD), sarcopenia, atrial fibrillation (AFib), and general pain/disability. These diseases are highly prevalent among older adults and frequently manifest as comorbidities: it is estimated that more than 5 million Americans have AD; an estimated 45 percent of older adult Americans are affected by sarcopenia; an estimated 9 percent of the 65 and older population have AFib; and, an estimated 60 to 75 percent of people over the age of 65 report at least some persistent pain.
The Alliance has already been engaging with patients and family caregivers in these disease areas through its leadership of initiatives such as the Accelerate Cures and Treatments for Alzheimer’s Disease (ACT-AD) coalition, the AFib Optimal Treatment Task Force, and the Aging in Motion (AIM) coalition. The Alliance will further collaborate on the SP&FCN with research experts, industry representatives, and organizations serving on the SP&FCN Advisory Council, including the American Cancer Society, StopAfib.org, National Alliance for Caregiving, the American Chronic Pain Association, Partnership to Improve Patient Care, and others. Through these collaborations, the SP&FCN will help participants to develop the research questions that would be most impactful to them, and to partner with clinicians/researchers to advance PCOR/CER for the older population. The vast under-participation of older adults in the research enterprise is due to many factors, including a high likelihood of comorbidity exclusion in research protocols, perceived financial issues, transportation barriers, and a fear of science and the system.
The purpose of the SP&FCN is to develop a patient/family caregiver-led nationwide cohort of advocates with 1) basic knowledge and understanding of PCOR/CER and how to develop research questions meaningful to older adults with chronic disease and their family caregivers; 2) training necessary to partner with clinicians and researchers in developing and implementing PCOR/CER projects; and 3) ability to provide the older adult patient perspective in key committees at the NIH, FDA, CMS, PCORI, and other organizations in the research ecosystem.
As part of the program, a small cohort of these patient advocates will then participate as mentors (e.g., “train the trainer”) to go on to expand the community of research-savvy SP&FCN. The SP&FCN program will be led by older adult patients/family caregivers, and designed and implemented by patients, stakeholders, and the healthcare community. This integrated team will then further support the training of additional patients to fully participate in PCOR/CER. The proposed solution will use multi-platform learning tools and community outreach, such as in-person and web-based meetings as well as social media tools, to fully engage the older adult community in PCOR/CER projects.
The project team believes this integrated solution that is patient-led and includes family caregivers, clinicians, researchers, key opinion leaders, and industry representatives will be the key to the success of the program.
Senior Patient and Family Caregiver Network
Sue Peschin of the Alliance for Aging Research describes her PCORI Engagement Award project to create a network of senior patients and family caregivers focused around clinical areas important to older Americans.
Sue Peschin of the Alliance for Aging Research spoke to PCORI at the 2018 Annual Meeting about why patient and caregiver engagement is important.