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Better Data, Better Access, Fewer Disparities Among NJ’s Healthcare Goals

Data transparency benefits patients, policymakers, but remains elusive objective

Carole Johnson, DHS
Carole Johnson, commissioner of the Department of Human Services

A more modern Medicaid system, with benefits that reward preventative treatment and good outcomes, and better addresses the social determinants of health. More coordinated, fully funded state health and welfare programs. And accurate, detailed, and timely data to guide patient and policy decisions.

Those elements are among the more progressive — and proactive — vision for New Jersey’s healthcare landscape, according to presentations from Carole Johnson, the acting commissioner of the state Department of Human Services, and Dr. Shereef Elnahal, acting commissioner of the Department of Health. Both alumni of the former Obama administration, they hope to make regulatory and operational changes that will improve access to care, particularly for the Garden State’s most vulnerable residents, and reduce racial and other disparities in health outcomes.

Johnson and Elnahal were among the healthcare policy leaders who spoke Friday at New Jersey Policy Perspective’s conference, Progress 2018: Building a More Just and Fair New Jersey, in New Brunswick. They were part of a panel, “From Defense to Offense, A Progressive Health Care Agenda for New Jersey,” moderated by Princeton University’s Heather Howard, a former state health commissioner, that included state Sen. Joseph Vitale, (D-Middlesex), the longtime health committee chairman, and other policy experts.

The event closed with remarks from Gov. Phil Murphy, a Democrat, who ran on a progressive platform last year and has embraced a number of the positions championed by NJPP, a left-leaning research group. “I know, as always with NJPP, there is sound advice. And I promise you we (in my administration) have been listening,” Murphy told the enthusiastic crowd.

State must do better

When it comes to healthcare, Johnson and Elnahal agreed the state must do better to address significant racial disparities in maternal health, infant mortality, and other health outcomes. New Jersey has made big strides in reducing infant mortality, but black babies still die at more than three times the rate of white newborns, and black women are more than three times more likely to die while giving birth than their white counterparts, according to state data.

“The disparity is shameful,” Elnahal said. “There is no mother within the first year of childbirth that should die as a result. That is a ‘never event,’” he said, using the healthcare term for disaster that could have been prevented. “And that is very much related to the performance of the healthcare system.”

The state can also do more to improve access to care, Elnahal and Johnson agreed. Efforts are underway to better integrate behavioral health and medical care, and to reduce operational gaps that are keeping eligible residents from getting Medicaid coverage. Officials at DHS are also exploring how Medicaid can be used to incentivize better maternal health outcomes, Johnson said.

Regulatory tweaks

Other changes are already underway. The new team made regulatory tweaks to enable Medicaid to pay for more family-planning services, additional hepatitis-C treatments, and new diabetes preventions, Johnson said. The state has also asked the federal government for greater flexibility in funding addiction and autism programs, she noted.

Murphy’s budget proposal also includes new funding for efforts that, while not healthcare programs, will have a positive impact on public health, Johnson said. This includes new investments in affordable housing, mass transit, and education, from pre-school through college.

“Families need things like childcare, access to transportation, and other services” to be economically successful and maintain good health, Johnson said. All these commitments improve the welfare services in question, she said, “and they are a value to the healthcare system as well.”

The Garden State’s challenges come at time of increasing pressure from Republican leaders in Washington, DC, to cut taxpayer costs, through efforts to eliminate the Affordable Care Act and scale back Medicaid, trim funding for children’s healthcare and community clinics, and other resource reductions, Johnson warned. “I was probably in my job for a week before we had a fire drill about what to do if the first (federal proposed) spending bill wasn’t approved,” she recalled.

Better access to data

For Elnahal, another priority is improving state officials’ access to quality, timely data. While the department collects massive amounts of information on everything from birth to vaccinations to viral outbreaks to death, it is not always consistent or current, he said, and some data must still be entered into state files manually. (The state is still compiling overdose data for 2017, for example.) The situation is time consuming for staff and creates challenges for policymakers, he said.

More accessible, transparent, and current data can also benefit patients, Elnahal said, allowing them to better understand their own conditions and comparison shop for treatments. Efforts are underway to create a “master person index,” or statewide system to identify patients without exposing their personal information, that can be used to link all electronic health records. Most hospitals are part of one of a number of regional systems, but a handful of facilities have yet to link to a network.

“That is where we want to go in the future,” Elnahal said of a fully integrated system. “And obviously, if you have a system like this, the people who benefit most are the patients and their families.”

Hospital executives are not always eager to share aspects of this data, Elnahal noted, based on concerns about privacy, competition, and other factors. He said he plans to work with those that are on board and encourage others to join the movement, perhaps through what he said would be voluntary “pledges” to share their patient data, without any identifying details.

“We want information blocking to stop. Information blocking is not good for patients,” he said. “The case for patients and policymakers is there.”

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