Insights from the HEADS Center's Translation Advisory Panel
The HEADS Center’s Translation Advisory Panel (TAP) met in September for its second convened meeting since the launch of the Center. The TAP is panel is a group of seven dynamic leaders with deep expertise in diverse areas relevant to AD/ADRD care, costs and services delivery in the U.S., and globally. One role for the TAP is to keep the Center’s leaders and scientists apprised of up-to-date developments in relevant fields (e.g., industry, health care delivery and financing, policy), and to guide and facilitate the Center’s work to ensure the research and science is compelling and relevant to stakeholders and effectively communicated to key audiences and networks so that the impact of research on practice and policy can be maximized. The TAP had a number of noteworthy updates, summarized below:
Disparities in outcomes (mortality, isolation, mental health, poor clinical/functional/behavioral outcomes) and inequities in care delivery (workforce shortages, burnout) for persons with AD/ADRD due to the COVID-19 pandemic were staggering and should be further evaluated quantitatively and qualitatively and data used inform policy, practice and research.
Identification, validation, and integration of outcomes that are meaningful and that actually matter for persons living with AD/ADRD and their care partners into quality of care metrics is needed.
Care coordination-focused models that could benefit persons living with AD/ADRD which aim for higher quality of care better outcomes and lower costs are the focus of new policy initiatives being worked on in Congress (Comprehensive Care of Alzheimer’s Act) and new alternative payment models being implemented by CMS (Primary Care First).
There are two important, newly released national AD/ADRD focused reports that provide new data and insights on disease prevalence burden, disparities, and promising new areas of research: The Alzheimer’s Association’s 2021 Alzheimer’s Facts and Figures (https://www.alz.org/media/documents/alzheimers-facts-and-figures.pdf ), and Women's Health Access Matters (WHAM) Report on Societal Impact of Research Funding for Women’s Health in Alzheimer’s Disease and Alzheimer’s Disease-Related Dementias (https://thewhamreport.org/wp-content/uploads/2021/10/TheWHAMReport_CAD_technical.pdf ).
Several training, data resources, and network initiatives that may be relevant to HEADS scientists are available or in the works including the A-LIST (www.alist4research.org), an online community of over 8000 persons interested in brain health that could be access by researchers to survey members on their experiences and perspectives; a new Summer Research Institute training opportunity funded by NIA and delivered by the Alzheimer’s Association (Applications for next year open 11/8- alz.org/summerinstitute); and practice-based research networks which are currently being explored by NIA as an option to accelerate the translation of research to practice.
Prioritization of research targeting risk reduction and dementia prevention is gaining momentum and may result in an update in the form of a 6th goal added to the national NAPA plan in the near future, and the resulting investment may have significant long term epidemiological and economic implications.
Several bills have been passed or are under consideration in Congress relevant to NIH, ACL and other agencies intended to accelerate research and availability and access to service to individuals and families in need, particularly for services related to home and community based care (e.g., American Rescue Plan Act; paid leave proposals).
We will look forward to next Fall when the TAP provides another annual briefing on insights from their world to inform the HEADS center leaders and scientists!