Barriers to Sharing Data Sources Could Be Overcome by Proposed Bill

Andrew Kitchenman | November 2, 2015 | Health Care
Integrated Population Health Database would unite information from health and social services

Camden Coalition of Healthcare Providers Executive Director Dr. Jeffrey Brenner is leading an effort to map "hot spots" where frequently hospitalized patients live, using the data to make healthcare more efficient.
One of the myriad uses for the ever-increasing amount of data collected by state agencies is to demonstrate the close connection between health and social problems.

It’s no wonder, then, that some healthcare providers want to use portions of that data to devise strategies to address multiple problems, such as the link between homelessness, mental illness, and addiction. Ultimately, researchers could gain a better understanding of how to help these people with both their housing and their health problems.

But state laws and regulations create barriers to sharing these data across different government departments.

Now, a proposed bill seeks to reduce these barriers by creating a statewide Integrated Population Health Database, intended to improve health research while maintaining the privacy of residents. Supporters say that there have already been some projects that show the potential benefits of sharing data, and that establishing a permanent database would make such projects easier to complete in the future.

Influential legislators from both major parties, including Senate President Stephen Sweeney (D-Cumberland, Gloucester, and Salem), have embraced the proposal.

The bill, S-3220, is sponsored by Sen. Joseph F. Vitale (D-Middlesex), Sen. Kevin J. O’Toole (R-Bergen, Essex, Morris, and Passaic), and Sweeney.

Vitale said he sees the bill as building on an earlier law he sponsored by that created a Medicaid Accountable Care Organization demonstration project. This initiative has led to three organizations based in Camden, Newark, and Trenton that are bringing healthcare providers together to coordinate healthcare for low-income residents.

Vitale said the new bill is “ACO 2” in that it has the potential to improve coordination of work between healthcare providers and social-service providers outside of the healthcare system. Combining health and other data in one place would allow researchers to help develop “a holistic approach that really takes into account all of the complex factors that really impact all patients,” he said.

The database would include information from the state Departments of Health, Human Services, Community Affairs, Corrections, and Agriculture, among other data sources.

The bill would create a governing board for the database that would include the Secretary of State (currently Lieutenant Governor Kim Guadagno); the attorney general; the health and human services commissioners; Rutgers University’s chief information officer; and four appointees of the governor. The director of the Rutgers Center for State Health Policy would serve as a nonvoting board member.

While the database would include information about specific people, it would have identifying information removed.

Those interested in accessing the data would have to apply to the board, through a process that the board would be required to develop. Advocates foresee researchers, policymakers, certified Medicaid ACOs, and community groups being among those who would be interested in analyzing the data.

Dr. Jeffrey Brenner, executive director of the Camden Coalition Healthcare Providers, is a driving force behind the bill, which draws on work done in 10 other states. The Good Care Collaborative, an alliance supported by the coalition that seeks to improve Medicaid, is building support for the legislation.

Currently, researchers must seek to create data-sharing projects on an individual basis, noted Brenner, the medical director for Cooper University Health Care’s Urban Health Institute. That requires approaching a state commissioner for each approval, which can require extensive legal and administrative work before a project can be launched, he said.

“If you’re connecting datasets from two different departments, that’s going to be a five-year project, because you’re going to just get clogged down in all the systems” without a framework like the proposed database, Brenner said.

The bill “creates the opportunity to connect Labor Department data, food stamp data, healthcare data, incarceration data to do some much, much smarter work,” Brenner said.

Brenner pointed to work that his coalition — which is a certified Medicaid ACO — has already done with the Camden County Police Department. By combining the local hospital data with records of residents’ “encounters” with police, the coalition was able to identify several groups of city residents, which can allow for tailored healthcare responses. He drew a parallel between this approach and the market segmentation research that has proven effective for businesses seeking to engage potential customers.

Brenner noted that just like in healthcare — where a small number of patients make a disproportionate share of hospital visits — 6 percent of Camden residents are responsible for 28 percent of arrests and other encounters with police. They’re often the same people — 200 residents made 10 or more hospital emergency-department visits and had six or more police encounters.

The coalition then used this data to determine that there were five different “subtypes” of residents within those 200 Camden residents, in much the same way as marketers divide consumers by different demographics. Those five subtypes were: nonviolent men with substance-use problems; people who were primarily involved with drugs with some history of violent crime; women with substance-use problems; men with heavier histories of violent crimes; and the homeless.

“You can actually create strategies, you can create specific interventions, specific relationships, specific pathways,” that call for different healthcare and social-service responses, Brenner said.

“This is what we should be doing with data, which is taking behavioral data, social data, healthcare data, and beginning to understand the population … and build high-reliability interventions for them,” Brenner said.

Vitale also noted that many nonviolent drug users primarily would benefit from behavioral-health treatment, not jail time.

“It’s not going to cost the state any real money – if (any) at all – and it’s going to save potentially hundreds of thousands of dollars, if not more,” Vitale said of the benefits that could derive from developing the database.

The bill was introduced in the Senate last week. Supporters say Assembly members are also interested in sponsoring the bill this year, and they’re discussing the measure with members of Gov. Chris Christie’s administration.