Through the National Institutes of Health (NIH) All of Us research program, scientists are able to put data into the hands of community members outside of those in health fields, explained Karriem Watson, DHSc , MS, MPH, responsible engagement lead for the NIH All of Us Research Program, during a presentation at the 15th American Association for Cancer Research Conference on the Science of Health Disparities in Cancer cancer in racial/ethnic minorities and the medically underserved. Instead, the All of Us research program encourages public access and knowledge of the public’s own data to better assess its implications for the public’s own communities.

Watson explained that in Chicago, health disparities and gaps in life expectancy were big topics of discussion among medical professionals and community members for many years. However, many city officials who made decisions that could impact these health issues were unaware of the disparities in cancer incidence and outcome and its impact on their communities. In addition, these officials were the ones who made the decisions regarding the allocation of government support and assistance for health care needs.

To better educate these elected officials about the incidence of cancer and its impact on the city, Watson and his colleagues worked to bring this data to the attention of elected officials. Additionally, the researchers helped explain and analyze the data and its implications for their communities in simple terms.

“When you take that data and give it to communities and not only encourage them to use it, but also make your faculty and staff accessible to those communities to help them navigate and understand that data, that’s really what we like to think of as liberating data science,” Watson said.

As the All of Us research program continues to work to provide a broader data set for public access, Watson explained that its goal is to enroll 1 million or more people across the United States in the over the next 10 years.

“We’re right about 523,000 people who signed up today, and of those, about 372,000 participants donated data that allows us to do a really deep dive,” Watson said. “Next, 80% of the 372,000 people belong to groups that are underrepresented in biomedical research, and 45% of them are self-identified racial and ethnic minorities.”

To access this data, Watson explained that there are 3 levels available. The first tier is the public tier accessible to anyone with digital access, which Watson recognized as a potential limitation of universal applicability.

“So we use that term anyone, but it’s contextualized,” Watson said. “It is accessible to anyone with Internet access. And it’s available to those who are able to view and understand the electronic health record (EHR) and see aggregated data about the conditions we have.

Watson further noted that at the public level, people can view the directory of research projects. He explained that this is especially important for community members who donate their data, as they can then see how that information is being used for research purposes. Additionally, the public can also see precisely what types of questions researchers are asking in reference to the use of their data.

“It’s something that really excites us,” Watson said.

Additional levels available to access the All of Us Research Program dataset include Registry Level Data and Control Level Data, which can provide information specific to the needs of each level level.

“So, for example, at the register-level data level, we have information from our surveys. We recently launched a survey on the social terms of health and a survey on COVID-19 where we asked questions about discrimination, questions about food insecurity, questions about social isolation as a result of the pandemic – and imagine that data coupled with EHR data from over 270,000 participants and physical measurements, and even data like wearables,” Watson said.

Due to the limited access of wearable devices as a measurement method, Watson explained that the All of Us research program has donated wearable devices to populations that do not typically participate in studies of this type. in order to expand the medical data collected.

In the next level of access at the control level, Watson noted that the program not only gathers what is available at the register level, but has expanded it to include demographic data on expenses, dates of events non-shipped and genomic data derived from whole genome sequencing. Additionally, Watson explained that the program will soon also be able to provide 3-digit postcode data as well as access-level control-level data, with over 24,300 health conditions and over 15,300 unique laboratory values.

“Today we have approximately 42,000 of our participants who have identified in their EHR that they have been diagnosed with cancer. That’s 18% of our participants living with cancer or having a diagnosis of cancer,” Watson said. “You think of some of the major cancers, like skin cancer, breast cancer, prostate cancer, colorectal cancer and lung cancer – from those projects we have over 2000 projects in our research register. This is just a snapshot of 162 that examine the intersectionality of cancer, asking questions such as the impact of nutrition and fitness on prostate cancer, social determinants of colorectal cancer, genomic variants breast cancer, then personal family history of cancer.

REFERENCE

Watson KS. The All of Us Research Hub: A data set for all of us. Philadelphia, PA: 15th AACR Conference on the Science of Cancer-Related Health Disparities Among Racial/Ethnic Minorities and the Medically Underserved; September 17, 2022.