Connecting state and local government leaders
As Maryland’s newly designated health data utility, CRISP can access more data, expand and scale services and better support other state agencies.
When a new Maryland law went into effect Oct. 1, it made the state’s designated health information exchange (HIE), the Chesapeake Regional Information System for Our Patients (CRISP), its health data utility (HDU), too.
The first legislation of its kind to become law in the country, it requires CRISP to provide data in real time to people and organizations that treat and coordinate care of patients and to public health officials. The purpose of an HDU, according to the legislation, is to collect, aggregate and analyze “clinical information, public health data, and health administrative and operations data” to help state and local health departments and other organizations evaluate public health interventions and health equity.
CRISP has already been acting as the state’s HDU, said Craig Behm, CRISP’s executive director, so many of the services will remain the same, but some data sources will change. For instance, “before the legislation was passed, we had just COVID immunizations [data],” he said. As an HDU, the state can share all immunization data so CRISP can use it for new purposes. “There’s a pathway for many new data types like that to flow from a state through us. We add adequate security and patient protections and then it flows downstream as appropriate,” he said.
Another benefit of making CRISP’s role as HDU official is scaling work that is conceptually or actually happening already, he added. One example is treating children with asthma. That type of use case is often “spearheaded by one really thoughtful, caring individual at a health department, and they might enroll 100 or 200 people, which is amazing – helping hundreds of people,” Behm said. “But we can really bring those ideas at scale, so maybe where it used to be one Medicaid managed care organization with one advocate at the health department helping 200 children, we can say, ‘Any time any child across the state goes to an emergency department with asthma, let’s drive the appropriate downstream interventions, enroll them in certain programs and build the support.’”
In support of Maryland’s goal to reduce the number of state residents with diabetes, CRISP can provide aggregate reporting to the state on its action plan so leaders can see month to month how they are meeting objectives for enrolling pre-diabetic people into prevention programs. That could enable evidence-based decisions that leaders could use to shift policies or approaches. Additionally, CRISP can push the data to doctors, hospitals or care managers who can then enroll patients in the programs.
“It’s the same data going in two different directions, depending on permissions and uses,” Behm said.
Security and privacy are paramount as data moves to and from CRISP and network members, he added. The new law requires the HIE to stand up a consumer advisory council, which it will model after those at hospitals, to ensure that consumers’ viewpoints are considered.
What’s more, patients can request what’s called an accounting of disclosures, which shows them everyone who saw their data. Someone either actively searches for a patient or pulls up a patient chart that shows our data through about 200,000 times per week, Behm said, and CRISP pushes messages to subscribers – for example, about a patient being discharged from the hospital – about 4 million times per week.
In addition to standard security approaches such as multifactor authentication, CRISP also requires all participating hospitals, nursing homes and private practices to reauthorize every 90 days, and it can see query histories through rosters that every participant shares. For instance, if a primary care physician provides a list of 10,000 patients, CRISP can see if someone from that practice searched for a patient outside that 10,000 and audit the action. Additionally, it has a service that looks at all queries in real time for things like celebrity names or other patterns of behavior indicative of incorrect use, Behm said.
Additional benefits that he said he expects to result from the law include increasing the number of providers and organizations joining CRISP because new data often attracts new audiences; expanding CRISP Shared Services, a separate nonprofit that works with HIEs in other states; and better support of other Maryland agencies.
“We’re hoping, to a large extent, it inspires other states to view health care data not as something that should be owned by a provider group or a network or restricted from being used to support patients, but instead data should flow freely – as appropriate, with good governance – to enable better care, better interventions, better decision-making,” Behm said.
Stephanie Kanowitz is a freelance writer based in northern Virginia.