By: Sue Peschin, MHS, President and CEO of the Alliance for Aging Research
For more than 30 years, the Alliance for Aging Research has guided efforts to substantially increase funding and focus for aging at the National Institutes of Health and U.S. Food and Drug Administration; built influential coalitions to guide groundbreaking regulatory improvements for age-related diseases; and created award-winning, high-impact educational materials to improve the health and well-being of older adults and their family caregivers.
We were thrilled to join the National Health Council (NHC) in early 2018 because of the clear overlap between our missions – to connect those representing patients and family caregivers with all health and innovation stakeholders to improve access to research and care. We are particularly appreciative of NHC’s leadership on patient engagement issues and its collaborative approach to value assessment.
In 2019, the Alliance is working on a number of initiatives, and I’ve highlighted a few of them below.
Senior Patient and Family Caregiver Network (SP&FCN): Research shows that involving older adult patients in decision-making about their health care leads to better patient outcomes and satisfaction. With support from the Patient-Centered Outcomes Research Institute (PCORI), the Alliance created the Senior Patient and Family Caregiver Network (SP&FCN) to help guide a new group of older adult patients and family caregivers each year on:
- Patient-centered outcomes research (PCOR) and the clinical trials process;
- How to develop research questions that are important to older patients and their family caregivers; and,
- How to find PCOR opportunities and encourage others to do the same.
We then help get them involved in public agency advisory committee roles, local comparative effectiveness research (CER) studies, and other research, policy, and health education-focused opportunities. In 2017 and 2018, the Alliance brought together more than 40 older patients and family caregivers facing Alzheimer’s disease, sarcopenia, atrial fibrillation, and chronic pain, and in 2019 we will expand to include older adults with heart valve disease and vision loss.
The network training is guided by members of the Alliance’s Senior Patient Engagement Advisory Council (SPEAC), which is a leadership council comprised of patients, researchers, payers, and industry representatives In addition to assisting with the training, the SPEAC is responsible for engaging directly with network participants, and ultimately amplifying the Alliance’s overall impact. We are always looking for new partners, so please visit our website[JS1] to learn more.
- National Heart Valve Disease Awareness Day is an annual campaign dedicated to increasing recognition of the specific risks and symptoms of heart valve disease, improve detection and treatment, and ultimately save lives. Observed on February 22 during American Heart Month, it brings together 65 campaign partners—non-profits, advocacy organizations, professional societies, and hospitals and heart centers—to help spread the word to approximately 154 million people about valve disease through various activities across the nation. In 2019 we held our flagship event at MedStar Washington Hospital Center with U.S. Surgeon General Jerome M. Adams, MD, MPH, WebMD Chief Medical Officer John Whyte, MD, MPH, and leaders from the Medstar Heart & Vascular Institute. To see our list of existing partners and join the campaign, visit us here.
- Accelerate Cure/Treatments for Alzheimer’s Disease (ACT-AD) Coalition is a group of more than 50 national nonprofit organizations, chaired by the Alliance for Aging Research, urgently working to speed the development of potential cures and more effective treatments for Alzheimer’s disease. Since its creation in 2005, ACT-AD has served as a liaison between the U.S. Food and Drug Administration, policymakers, and the Alzheimer’s patient community – convening the groups to propel forward the national narrative surrounding Alzheimer’s disease clinical development. Please join us for our next webinar on Wednesday, April 17 from noon-1 p.m. EST to hear from Dr. Rudolph Tanzi and Dr. Robert Moir, two preeminent researchers in Alzheimer’s disease, for a presentation on the latest cutting-edge research behind the antimicrobial protection hypothesis of Alzheimer’s disease.
- Education and mobilization of older adults about the Institute for Clinical and Economic Review (ICER): ICER produces reports, known as “comparative effectiveness research,” on how much it thinks new drugs should cost. ICER metrics value treating young individuals in good health as more cost-effective than treating older adults (65 and older) or people with disabilities. The Alliance believes that ICER’s methodology for determining drug value is unscientific and discriminatory. When applied to health care decisions, ICER’s methodology can mean older adults, people with disabilities and veterans are deemed “too expensive” to receive care. We have launched an online digital ad campaign and www.icerfacts.org webpage. Please help us spread the word!
- Co-manage the Friends of PCORI Reauthorization Coalition: The purpose of the Friends of PCORI Reauthorization is to convene a large and growing group of patient, provider, employers/payers, industry, and research stakeholders that have an interest in supporting reauthorization of the Patient Centered Outcomes Research Institute (PCORI) in 2019. Leveraging the respected voices of former Rep. Tony Coelho (D-CA) and former Rep. Dr. Phil Gingrey (R-GA) as co-chairs, the Friends of PCORI Reauthorization Coalition is positioned to serve as the necessary bipartisan, interdisciplinary advocacy and policy platform the community needs to help ensure success. The Alliance is honored to help co-manage this effort with the Partnership to Improve Patient Care. If you haven’t done so already, please join us!
To learn more about the Alliance’s activities in support of its mission to improve the overall experience of aging, visit www.agingresearch.org and see our impact here. For more information, please contact Lauren Smith Dyer.
For more information on becoming a member of the National Health Council, please contact NHC Senior Director of Member Services & Development Kelly Garrity.