A team of health care providers is canvassing the streets of Camden, New Jersey. From living rooms to underpasses, shelters to apartments, the health care providers are tracking down patients who just checked out of the hospital. But before they 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 hospitals to labs and other local programs.
The mastermind of the HIE is the Camden Coalition of Healthcare Providers. The coalition aims to get more of the city’s health care providers on the same page through the wealth of 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. That extrapolation won’t be easy. The size of our populations and dimensions of our health care 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.
Yet even in Northern New Mexico, abundant data and the infrastructure and flexibility to share it with providers throughout the state are of vital concern to patients — especially those with the most complex health care 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 health care 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 HIE, then — in its sophistication and record of coordination — could offer important insights as rural New Mexico builds its own data-sharing infrastructure.
‘Wealth of information’
The data marshaled by the Camden Coalition consist not solely of names and numbers or one-page billing documents stored on a server. Instead, the data tell 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 emergency room visits at different hospitals, outpatient visits, lab and X-ray results, procedures, consultations and conversations 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 weekslong 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 are helpful tools in creating 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.
‘Health care 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 health care 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 health care needs. Complex patients, like those facing addiction, require care from a menagerie of providers in a health care landscape in which even small gaps create a fractured system. Those complex patients rely on the most expensive part of the health care system — the ER. Just 1 percent of patients in Camden account for 30 percent of that city’s health care costs, according to the 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 insurance 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 the coalition began its “seven-day pledge,” only 20 percent of people were going back to a primary care doctor. Today, the coalition sees about 40 percent of people return to the doctor.
The value of the HIE is perhaps most obvious every morning when it generates a report that helps identify super-utilizers. The coalition uses the system for “health care hotspotting” — using data strategically to get complex patients into services with a record of success.
The 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 nurses and social and community care workers tracks down patients for face-to-face conversations, whether that’s in their home, a shelter or at McDonald’s. Patients can also meet with a community health care worker once a week to chart a course through the wide world of mental and behavioral health care options.
It requires a nuanced conversation.
For many people with complex health care 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 HIE information 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 Murray.
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,” Murray said. The coalition is now pairing up with the Massachusetts Institute of Technology to assess how the care management team has reduced unnecessary hospitalization around the city.
It’s not just patients who have to trust the coalition and its HIE with their information. So, too, must the providers in the network.
Most data flowing into the HIE come from local hospitals. Protecting patients’ data is 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 coalition.
Trust remains at the work’s core. 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 coalition has created isn’t just “rules on paper,” Waller said.
Lessons for New Mexico
The coalition and its data exchange are not perfect. Since its launch six 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 cordon off mental health and addiction information; added layers of patient consent can interrupt the flow of data into a nimble system.
In some ways, New Mexico and New Jersey 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 health care options and no central exchange, useful data can be as rare as water in a drought.
But the lessons drawn from the coalition’s HIE offer guidance to rural regions, like Taos and Río Arriba counties, 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 health care network that cares for the most vulnerable and complex patients. That takes buy-in and trust among providers and patients.