Federal data play an essential – and mostly invisible – role in supporting the more than 7 million Americans with Alzheimer’s and their nearly 12 million unpaid caregivers
Too often, we think of federal data as limited to high-profile datasets like jobs, weather, and the census. But beneath that surface is a diverse ecosystem with well over 500,000 datasets – including those tackling Alzheimer’s disease and related dementias (ADRD).
We recently published the Federal Data Field Guide to highlight the different species of federal data that benefit everyday Americans. In this post, we use the Field Guide’s framework of eight categories (Statistical, Administrative, Geospatial, Scientific, Accountability, Evaluation, Navigation, and Reference data) to scout for federal datasets that are improving the lives of Americans affected by ADRD
Federal Data Improving Our Understanding of ADRD
Here’s a quick look at the valuable federal data underpinning our understanding Alzheimer’s disease and related dementias (ADRD):
How prevalent is Alzheimer’s Disease in the U.S.?
Statistical Datameasure population level characteristics. The National Center for Health Statistics’s National Health Interview Survey estimates that about 4% of the non-institutionalized population over 65 has been diagnosed with dementia, while mortality data from the National Vital Statistics System (NVSS) track deaths from Alzheimer’s. NVSS also fits in the Administrative data category from the Field Guide, because it draws information from death certificates processed by state governments.
What are the genetic, social, and environmental determinants of Alzheimer’s disease?
Geospatial Data describe location and environmental information about the world. Evidence links air pollution to increased Alzheimer’s risk. The EPA’s Particulate Matter Pollution data–collected through a network of monitors operated by state, local, and tribal agencies–are vital for enforcing clean air regulations and, by extension, reducing risk for ADRD
Scientific Dataadvance knowledge through federal or federally-funded research. The Veterans Administration’s Million Veteran Program (MVP) has identified key variables associated with ADRD in veterans, such as traumatic brain injury, depression, and military environmental exposures, offering critical insights for both prevention and intervention. And, the NIH’s GenBank hosts a trove of genetic data that researchers use to develop screening tools, treatments, and medications for ADRD
How do federal data help caregivers and patients?
Navigation Datahelp citizens find and access services. The Centers for Medicare and Medicaid Services’ Nursing Home Care Compare Database helps caregivers assess facilities for their loved ones. This dataset also fits into the Accountability category, as it includes critical quality metrics. NIH’s ClinicalTrials.gov dataset helps families identify the clinical trials that might be a match for their loved one. Another important navigation dataset from NIH is PubMed, which houses over 40 million citations to the biomedical literature, enabling scientists, clinicians, and families to stay up on the latest Alzheimer’s research.
Reference Dataprovide standardization across systems. How can this type of data help people with ADRD? The Social Security Administration maintains a reference dataset on medical conditions qualifying for Compassionate Allowances. This in turn enables a 45-year-old diagnosed with early-onset Alzheimer’s to fast-track her disability benefits because the condition is officially recognized in the dataset.
Evaluation Dataassess how effective different programs are. For example, HHS has funded data collection on millions of telehealth appointments to evaluate access, quality, and utilization. These data are used to improve telehealth services, which can be a game changer for ADRD caregivers – especially those with mobility impairments that make it hard to make in-person medical appointments
These are just 10 of the many federal datasets related to ADRD that span the eight categories of federal data. Without understanding the different categories of federal data, it is easy to overlook datasets like these that are essential for improving the lives of people impacted by Alzheimer’s disease.
It is more urgent to appreciate the interplays of data brought to bear on just one health issue at a time when administrative actions, budget cuts, and destaffing, threaten the capacity of agencies to collect, maintain, and publish them
Mapping out a broad range of federal datasets in a specific domain like ADRD is a useful exercise for two reasons. One, most federal data are underutilized or taken for granted. We’ve already paid for these data as taxpayers and we should make good use of them; every reuse of a federal dataset is value-added to its return on investment. And two, the federal data ecosystem will be more resilient when more people know about, care about, and advocate for the datasets on which they depend. Identifying and talking about the value of federal data is the first step to protecting their continued flow.
Take action
Do you want to get a better understanding of the federal data that make your life, or your life’s work, better? And do you want to get the tools to help keep those essential data flowing?
Here are some concrete steps you can take:
- Use the data categories in the federaldatafieldguide.us to map out the federal datasets you might be taking for granted, whether you work on issues around housing, climate, veterans, children, small businesses, agriculture, or whatever.
- Sign up for the newsletter at dataindex.us to be up to speed on opportunities to give feedback to federal agencies on specific datasets or data policies.
- Visit the Data Checkup at dataindex.us to see which of your datasets have been assessed for risk – and let us know what datasets you value and want prioritized.
- Check out essentialdata.us to see if the datasets you’ve identified are represented in our collection of use cases about how federal data benefit everyday Americans. If not, submit a dataset, or reach out to schedule a workshop to create use cases that cover your domain.
The Federal Data Field Guide is a free, plain-language ren Executive Fellowship in Applied Technology Policy at UC Berkeley. Learn more atfederaldatafieldguide.us
TheFAS Data Policy Instituteis a catalyst for advancing the field of data policy to build better outcomes for the American people, by building the civic infrastructure to monitor changes to federal datasets; mobilize data stakeholders to engage with government officials; advance policies to protect and improve essential public data; and design America’s future data ecosystem
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