How can healthcare providers, payers, and public health departments get clinical, social, and Fitbit data about the communities they serve? From a health data utility (HDU), according to Nichole Sweeney, general counsel and chief privacy officer at CRISP, the designated HIE in Maryland and the District of Columbia.

Sweeney, who also is a board officer for the Consortium for State and Regional Interoperability, explained recently to the Connecting for Better Health coalition CRISP’s response to a Request for Information (RFI) from the National Institutes of Health (NIH). The federal agency sought information specifically from HIEs and HINs for its All of Us Research Program about how electronic health records (EHR) can contribute to public health research; All of Us is focused on improving health care through the development of a diverse database that can inform thousands of studies on a variety of health conditions.

Large gaps often exist in research data sets, said Sweeney, and it can be very burdensome for research entities to get this data from providers.

CRISP, she said, is committed to thinking about health beyond clinical data – to include the health of the whole person, population-level health, and healthier communities – through the HDU model.

Sweeney described an HDU as “an organization that makes sure everyone gets the data they are entitled to get, no more and no less, while specifically upholding individual privacy.” HDUs can provide, for example, clinical, social, and Fitbit data. “You can have sort of a one-stop shop to get this data from a not-for-profit entity,” she said.

In its response to the RFI, CRISP identified several ways CRISP and other HIEs and HINs can help to improve NIH public health research.

Advice from Sweeney: researchers don’t need to “reinvent the wheel” on collecting social data because HIEs and HINs can fill in gaps in that area and used as a resource for more than clinical data.

HIEs and HINs also can help with patient matching, allowing researchers to get patient consented data earlier and faster than other sources of the data, she said. These organizations also can help enrich demographic data needed for research studies and with providing population-level data analytics.

“The opportunities are endless here and folks at the federal level are realizing that,” Sweeney said.