By Elisa Becze, BA, ELS, and Chelsea Backler, MSN, APRN, AGCNS-BC, AOCNS®
The future of cancer care is here: precision medicine has led to many of today’s newest cancer treatments and has made incredible progress since former President Barak Obama first announced the U.S. Precision Medicine Initiative (PMI) in 2015.
Although many oncology nurses see the outcomes of precision medicine as they administer new therapies for breast, lung, and colorectal cancers; melanomas; and leukemias, its potential for other cancers and diseases could be endless. But before those potentials become reality, researchers—including nurse scientists—need more data. Identifying targets for precision treatments requires scientists to find patterns among patients’ genetics and genomics, lifestyle behaviors, and the environments in which they live and work, and a large data pool ensures the most accuracy.
“Ultimately, we will need to evaluate the most promising approaches in much larger numbers of people over longer periods,” National Institutes of Health (NIH) Director Francis S. Collins, MD, PhD, and former National Human Genome Research Institute Director Harold Varmus, MD, said in a 2015 New England Journal of Medicine article. “Toward this end, we envisage assembling over time a longitudinal ‘cohort’ of one million or more Americans who have volunteered to participate in research.”
Four years later, that vision is almost a reality. With PMI funding, NIH created the All of Us Research Program in 2016 to eventually collect data over several years from more than a million volunteers living in the United States. Earlier in 2019, All of Us released a beta version of its data browser, which makes the data publicly available to researchers from around the world.
Nearly 200,000 people have enrolled in the program as of May 2019, and more than 143,000 agreed to share their health data. The program has participants from all 50 U.S. states, and 80% are from communities that have been underrepresented in past research.
Data are collected from multiple sources. Consenting participants complete surveys about demographics, lifestyle factors such as smoking status, and overall health. In addition, participants submit physical measurements such as weight, pregnancy status, blood pressure, and waist circumference by visiting one of the program partner locations. Volunteers have the option to share deidentified, standardized data from their personal electronic health record as well as submit biosamples (e.g., urine, saliva) for future analyses such as genomic sequencing. They can share data such as heart rate and blood pressure from wearable health devices.
Although the browser’s data breakdown is limited in the beta version, future expansions are planned. In addition, the Researcher Workbench is scheduled to launch in winter 2019 to offer more in-depth analysis. Workbench users are required to complete a registration process, ethics training, and data use agreement.
All of Us is still open for recruitment in effort to reach its goal of one million participants. Any U.S. resident aged 18 or older of any race, ethnicity, sex, gender, sexual orientation, and health status are eligible to join, and rigorous security measures are in place to protect patient privacy. It also offers funding opportunities for research scientists, and healthcare professionals can subscribe to receive updates from the program’s homepage.