What New Mexico can learn from New Jersey’s approach to health data

Healthcare providers are trying to get on the same page across diffuse networks of providers.

 

A team of healthcare providers is canvassing the streets of Camden, New Jersey this morning. From living rooms to underpasses, shelters to apartments, they’re tracking down patients who just checked out of the hospital. But before team members can hook them up with resources in the community, they’ll have in-depth conversations to figure out each patient’s goals — whether that’s better managing their pills, finding an apartment or getting into detox. It’s a nuanced discussion.

And each conversation arose from data.

The Camden Coalition Health Information Exchange (HIE) is a trove of patient information that streams into a central database from an ever-expanding network of providers, from area hospitals to dozens of other programs and offices. 

The exchange’s mastermind is the Camden Coalition of Healthcare Providers.

The Camden Coalition aims to get more of the city’s healthcare providers on the same page, both through data provided by the HIE and by sitting down with people face-to-face.

That success suggests that Camden’s approach could be exported to other areas — perhaps even Northern New Mexico. Granted, that extrapolation won’t be easy. The size of our populations and dimensions of our healthcare systems differ greatly. In a state as large and sparsely populated as New Mexico, mental and behavioral health infrastructure is often spread thin. Detox and other supportive programs are few and far between. 

Members of the Camden Coalition's care management team take to the streets to find people in their homes to hold in-depth conversations aided with troves of information from the Camden Coalition health information exchange.
April Saul

Yet even in Northern New Mexico, abundant data, and the infrastructure and flexibility to share it with providers throughout the state, is of vital concern to patients — especially those with the most complex healthcare needs. Some headway has been made. Río Arriba County’s Pathways program, which launched in 2015, tracks and shares data about the progress and health of drug addicts recently released from prisons or rehabilitation centers. Three other Northern New Mexico counties, including Taos, plan to join the program. Locally, the Taos County Detention Center has partnered with Tri-County Community Services, a mental and behavioral healthcare provider, to build long-term relationships with detainees and get them to the programs they need upon release. In each instance, the sharing of data proves essential.

Camden’s experience with its sophisticated, well-coordinated HIE, then, offers important insights as rural New Mexico builds its own data-sharing infrastructure. 

A WEALTH OF INFORMATION
The data marshaled by the Camden Coalition is not just names and numbers or one-page billing documents stored on a server. It’s the bigger story of each and every patient.

The organization launched its HIE in 2010, and immediately gained buy-in from three major hospitals in Camden. A critical mass of data started flowing into the database.

A patient’s “file” in the HIE is no slender folder. It contains all the information from their ER visits at different hospitals, out-patient visits, lab and x-ray results, procedures, consultations and conversation with doctors, nurses, counselors and social workers.

Christine McBride, program assistant for the Camden exchange, called the HIE “a wealth of information.”

All that information is uploaded to the system in real time. Any trained and licensed professional provider within the HIE network can pull a patient’s entire record, avoiding weeks-long delays in essential communication. 

“You don’t have to call a hospital to have them fax over documents to your office,” said McBride.  

The quest for more data is the quest to better care for the people of Camden. More information — and easy access to it — helps create a robust and accountable network of providers. “The more data, the more valuable the system,” said Dr. Corey Waller, senior medical director for education and policy. 

HEALTHCARE HOTSPOTTING 
For a doctor or social worker, having a more complete and nuanced medical history at hand is especially important for patients with complex medical and social needs that smudge the boundaries of a siloed healthcare system.

“Both mental health and addiction have this added heavy aspect…the social connectedness piece,” said Waller. Where someone lives, and the support they rely on, affect their healthcare needs. Complex patients, like those facing addiction, require care from a menagerie of providers in a healthcare landscape where even small gaps create a fractured system. Those complex patients rely on the most expensive part of the healthcare system — the emergency room. Just 1 percent of patients in Camden account for 30 percent of that city’s healthcare costs, according to the Camden Coalition. They call those patients “super-utilizers.”

When anyone, not just a super-utilizer, is hospitalized in Camden, it engages the coalition, the hospital and insurances providers with the ultimate goal of getting that patient back in front of a primary care doctor within seven days. 

While the HIE isn’t exclusively used to reconnect patients to primary care offices, it’s a vital component in the strategy. At the time that the Camden Coalition began their “seven-day pledge,” only 20 percent of people were going back to a primary care doctor. Today, the Camden Coalition sees about 40 percent of people return to the doctor.

The value of the HIE is perhaps most obvious every morning when the HIE generates a report that helps identify super-utilizers. The Camden Coalition uses the system for “healthcare hotspotting” — using data strategically to get complex patients into services with a record of success.

The Camden Coalition searches out people who’ve been to any ER two or more times within six months. Within 72 hours after a patient is discharged from the hospital, the organization’s 15-person care management team of RNs and social and community care workers tracks down patients for face-to-face conversations, whether that’s in their home, a shelter or McDonald’s. Patients can also meet with a community healthcare worker once a week to chart a course through the wide world of mental and behavioral healthcare options.

But that requires a nuanced conversation.

For many people with complex healthcare needs, “a lot gets lost in translation when they are in a provider’s office. Maybe they clam up. Or maybe they can’t express themselves,” said Renee Murray, associate clinical director for care management initiatives.

The team can use the information in the HIE to drive a more fruitful conversation. “We really learn the patient’s story. We get a comprehensive picture of what’s going on medically and socially,” said Murry.

The care management team’s targeted intervention for super-utilizers has touched about 500 lives since its most recent iteration in 2012. “Success isn’t uniform. It’s unique for every single patient,” Murry said. The Camden Coalition is now pairing up with MIT to assess how the care management team has reduced unnecessary hospitalization around the city.

BUILDING TRUST 
It’s not just patients who have to trust the Camden Coalition and its HIE with their information. So too must the providers in the network.

Most data flowing into the HIE comes from local hospitals. Protecting patients’ data is both enshrined in state and federal laws. “Once information is outside your control, that’s a scary thing. You have to have confidence it’ll be handled in a predictable way,” said Waller. 

That confidence doesn’t come easily. The organization and its data-sharing agreements arose out of informal meetings among primary care doctors around Camden. Dr. Jeffrey Brenner, executive director of the coalition, was frustrated by the disconnect between primary care doctors and the hospitals. Patients were slipping through the gaps. Once a month, Brenner and other providers got together simply to discuss the limitations of what they each could do for patients with overwhelming needs. These nascent relationships evolved into the formal Camden Coalition.

Trust remains at the core of their work. The HIE is governed by a consensus-driven body with representation from all the providers, said Mark Humowiecki, general counsel for the coalition and director of legal affairs. Taking the time and care to not split votes “slows things down,” he said, “but it’s critical to everyone feeling like they have a voice and a say.”

Routine trainings, check-ins and audits ensure that the delicate balance the Camden Coalition has created isn’t just “rules on paper,” Waller said. 

LESSONS FOR NEW MEXICO 
The Camden Coalition and its data exchange remains imperfect. Since its launch 6 years ago, the system has undergone numerous tweaks, along with a major switch in software vendors. There are definite improvements to be made — like a built-in direct messaging app that would let providers communicate more quickly and thoroughly. Federal laws that govern privacy also cordon off mental health and addiction information. Added layers of patient consent can interrupt the flow of data into a nimble system.

So what can Northern New Mexico learn from Camden’s experience?

In some ways, the two places are different enough to frustrate comparison. In Camden, if one hospital can’t get you specialty treatment, the next one is just a bus ride away. In rural New Mexico, where there are fewer providers spread across a greater distance, a single visit could mean a five-hour drive and a day off from work.

And in New Mexico, with fewer healthcare options and no central exchange, useful data can be as rare as water in a drought.

But the lessons drawn from Camden Coalition’s health information exchange offer guidance to rural regions, like Taos and Río Arriba County, that are currently building their own technology infrastructure. If programs like the partnership between the Taos jail and Tri-County ever hope to scale up, their data infrastructure will demand a higher level of sophistication.

Most important, data alone will not solve the enormous obstacles to a unified healthcare network that cares for the most vulnerable and complex patients. That takes buy-in and trust among providers and patients. And that trust, in turn, can only be built by sitting down and showing up — again and again and again.

This story is part of the "Small towns, big change" project through the Solutions Journalism Network.