The Alliance for Aging Research proposes the expansion of the Senior Patient & Family Caregiver Network (SP&FCN) with a continued focus on patients and family caregivers of patients with Alzheimer’s disease (AD), sarcopenia, atrial fibrillation (AFib), and chronic pain, with additional focus areas for patients and family caregivers of patients with age-related macular degeneration (AMD) and heart valve disease (HVD). Over the past two years, the alliance has been engaging with patients and family caregivers through the SP&FCN in AD, sarcopenia, AFib, and chronic pain. With funding from PCORI, the SP&FCN has held webcasts and annual patient and family caregiver trainings and performed one-on-one follow-up to help each trainee identify and pursue opportunities to become involved in patient-centered outcomes research (PCOR) and comparative effectiveness research (CER). The SP&FCN has capitalized on the alliance’s experience in these disease focus areas to address the significant underrepresentation of older adults and their family caregivers in PCOR/CER by empowering them to partner with physicians, researchers, federal agencies, and industry. The network will continue to help participants to better 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.
This network is empowering senior patients and their family caregivers with the knowledge needed to engage as research team members, participate on decision-making committees within research organizations, assume roles in the research enterprise, and disseminate research outcomes. The SP&FCN program is led by the Senior Patient Engagement Advisory Council (SPEAC), comprised of older adult patients/family caregivers, clinicians, researchers, industry representatives, and payers, and the training curriculum and evaluation process is designed with them at every step. The SPEAC will slightly expand to further support the training of additional patients. The proposed solution currently uses multiplatform learning tools and community outreach, such as in-person and web-based meetings, an online community, and social media tools to fully engage the participants.
The SP&FCN will deliver course content through in-person and web-based training workshops, supplemented with access to a robust online community and mentorship to foster and feed continuing education. The project team believes this integrated solution—patient-led and inclusive of family caregivers, clinicians, researchers, key opinion leaders, and industry representatives, using a variety of venues for engagement—is essential for the continued success of the program.
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