How medical records and data sharing agreements bridge gaps in health care and homelessness services

This story is from The Pulse, a weekly health and science podcast.

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When someone is homeless, or on the brink of losing their housing, they often receive support services at shelters and from community organizations that work on housing issues.

When they need medical care, they typically must visit hospitals or clinics.

 Often, people need both types of services — housing and medical care — at the same time. But there’s a major problem: these two different systems designed to help people don’t communicate, which creates issues for providers working with these vulnerable populations.

 “The people who work in those systems didn’t know each other,” said Beth Sandor, chief program manager of Community Solutions, a national nonprofit working to solve homelessness. “They didn’t understand each other’s language.”

When systems operate in silos, Sandor said it makes it tough for people to navigate their way toward the care they need.

“It’s like a game of Chutes and Ladders,” she said. “You complete two steps and then you get brought back to the beginning again. It can be demoralizing for people, but maybe more importantly than that, it could be deadly for people.”

In 2020, Community Solutions’ Built For Zero initiative launched a three-year national pilot project to identify and address gaps in health care for people who are homeless — and a lack of data sharing and medical records has turned out to be part of the issue.

Records and data about a person’s medical history are supposed to provide important background information for treatment and care. It helps providers keep track of test results, what medications a patient is taking and other health issues they might be facing. 

But because health systems and homeless response programs don’t interface directly with each other, it becomes challenging to piece together a patient’s medical history for someone who may lack a permanent address, who may receive sporadic care at different facilities.

One outcome of the pilot project has been the creation of a blueprint for systems to share data in a way that helps both systems provide better continuity of care for the same population of people they serve.

One of the pilot sites for the project is Washington County, Oregon, a suburban community making up the western flank of the Portland metro area.

 “It’s figuring out, what is the thing that we do that will have the most impact for our vulnerable patients and homeless folks in the community,” said Ruth Adkins, government relations manager at Kaiser Permanente Northwest, a major health care system in the region. “And how do we do it in a way that each of our systems and regulatory frameworks allows within very complex environments.”

Kaiser Permanente Northwest partnered with other local health organizations and homeless response workers to streamline the flow of information about a person’s medical and housing needs between the different providers.

Ideally, a homeless outreach worker would be able to send information — sensitive, private information — about a client to the hospital system. On the other end, health providers could then access that data to get a better idea of a person’s medical history, their living situation and current health care needs.

While it sounds like a straightforward solution, Adkins said the process of creating this data sharing agreement was difficult and lengthy, and involved teams of lawyers and ethical experts on both sides.

“We want to make sure we’re protecting the rights and data of vulnerable individuals,” Adkins said. “Each system’s default is to protect and not release and not share, for good reasons. And yet, from my perspective as a non-lawyer, non-expert, to me it was like, how can we help people? And this is getting in the way of helping people.”

When homeless outreach organizations and health systems finally agreed on a way to share information in a secured and protected way, Adkins said that’s when they were able to take the next step of actually coordinating care for people.

 “We’re able to look at their charts, figure out what their issues are and then we come together every two weeks — a patient navigator, another person from the health system and the homeless case managers for the individuals,” she said. “And in a trauma-informed, person-centered way, we just huddle and figure out what is this individual’s needs? Where is a system failing these folks?”

Some of the cases are complex and involve cancer care or multiple chronic diseases, including mental health and substance use disorders. Others are simpler.

Allie Alexander Sheridan, business operations manager of the Homeless Services Division for Washington County, Oregon, explained some of the types of cases she sees.

“This could be something like, someone has an upcoming cardiologist appointment that’s really important that they make it to. This could be someone’s currently in the ICU at one of our local hospitals,” she said. “It could also be we’re seeing that this individual has utilized the emergency department 40 times in the past three months and they really need to get connected to clinic-based care.”

For one person, it meant getting their medications delivered directly to the shelter where they were staying, because coordination teams realized this person couldn’t get to a pharmacy 35 minutes away while working full time.

Working closer together as partners in the community has improved both support systems, Sheridan said.

“It’s also helping to educate our housing services providers on understanding why an assignment to a primary care physician is important for individuals and what other resources are in the health care system that we can leverage,” she said.

Sheridan said the data sharing and case conferencing for individual people have really opened the door to a level of care continuity that really didn’t exist before for this population of people.

“We’re coming together and we’re saying, someone has an upcoming appointment, or we haven’t seen this individual since they’ve been discharged from the hospital, and they have a follow-up appointment coming up — are you engaging with them? How can we get them connected to care?” she said.

At a pilot site in Sacramento, California, local health care systems and homeless response services there have also teamed up to implement a data sharing agreement to allow for better care coordination.

Jay Robinson, senior vice president area manager for Kaiser Permanente in Sacramento and South Sacramento, said they’ve already been able to connect more people to primary care providers and specialists, which has resulted in fewer people seeking care at emergency rooms.

The next step, Robinson said, is to collect even more comprehensive data and use it to better meet both the medical and housing needs of people in the community.

 “There’s obviously concerns around HIPAA and we don’t want to violate anybody’s privacy,” Robinson said, “but we’re working to get more specific data, more tailored data than we even have right now so that we can work on specifically channeling interventions for people who are homeless so that we can get them into longer-term housing.”

Right now, much of the data and medical record sharing agreements at the pilot sites is a one-way stream: information from homeless response services is sent to health care systems.

But local leaders hope this is laying the groundwork for a larger coordination effort where information flows both ways, and a framework that can be adopted by other cities and health systems across the country to better care for people who need both housing and health care.