Chicago-Area Community Information Exchange to Target Homelessness
This year, a Chicago-area community information exchange (CIE) is set to launch with the goal of coordinating care for homeless individuals. The initiative will integrate clinical and social data, enhancing care coordination between federally qualified health centers (FQHCs) and shelters. Waldo Mikels-Carrasco, director of the Center for Health Information Sharing and Innovation at the Illinois Public Health Institute (IPHI), which focuses on multi-sector data sharing to address social determinants of health, spoke with Healthcare Innovation about the nascent CIE.
Led by IPHI, the Chicago Regionwide CIE effort, developed in partnership with the Chicago Department of Public Health and the Cook County Bureau of Economic Development, will seek to create a network that connects healthcare providers, social services, and community-based organizations to better address the needs of underserved populations in Chicago.
The company providing the CIE's technical infrastructure, 4medica, says that its interoperable architecture include advanced data integration tools, precise identity matching algorithms, and a user-friendly interface for managing clinical and social service data.
Healthcare Innovation: What was the impetus behind the Chicago Regionwide CIE and how did the project come together?
Mikels-Carrasco: Discussion around CIE has been active for several years in the Chicago region. The CIE in San Diego grew out of the desire to address the large number of people experiencing homelessness in San Diego County in very similar ways. That's often been where CIEs begin, because it's complex and multifactorial, with different groups needing to address the problem. People don't just have a housing problem; they have multiple problems. Housing is just like the chief identifier.
In Chicago, there were many discussions, both at the county and the city level. In many places in the country, the city and county government often have their own agendas and don’t play nicely in the sandbox. There had been a history of that in Chicago. But both the city and county independently had community equity boards and different movements that identified the need for far more coordination of care delivery, especially for people experiencing homelessness and other vulnerable populations. They identified that a CIE would be appropriate to deploy in a metropolitan city like Chicago and Cook County, which is the second-largest county in the country.
HCI: What about the health systems or FQHCs? Are they on board and involved in this?
Mikels-Carrasco: In Illinois, they've had one and a half attempts and failures at establishing a health information exchange. So the idea of independent information exchange among healthcare providers is a little controversial at this point. But in talking about establishing a CIE or HIE, we talk about a use case, right? Is it chronic disease? Is it maternal health? Homelessness? And within that, specifying who are the most vulnerable or critical populations and or applications.
Within the domain of addressing people experiencing homelessness, the initial use cases that were identified through last year's planning work, with input from from different members of the community and agencies, was that we should concentrate on medical respite and shelter-based care.
Medical respite is a subcategory of shelter-based care, but very well-defined, and it actually is one of the use cases supported by Illinois’ 1115 Medicaid waiver. It has a very specific care delivery model that it follows. For both of those, it would be necessary to have both a clinical partner FQHC and a shelter partner. We have 14 organizations that will be involved in those two use cases and that will establish the initial network of organizations for the CIE over the next year. One of the FQHCs is actually more of a “look-alike” that is run by one of the major hospital systems in Chicago. So healthcare is entering into this, but not with a desire to establish another HIE, but rather to focus the work on more applied exchange around use cases with populations that they are already working with.
HCI: I understand you are partnering with a company called 4medica on the technology infrastructure. What did you like about their solution?
Mikels-Carrasco: Because there are only a handful of CIEs in the country, there hasn't been a lot of commercial development or innovation in that area. There was never a “Meaningful Use” for social information, and because of that, there was no standardization. So when we started the process of establishing the technical requirements and data standards for what we would need this to do, especially with these use cases that had both clinical and social information, there were certain guardrails that we had to have. The homeless management information system data sets and data collection are determined by HUD. So it has wildly different standards. We really needed to find someone who understood the clinical side and could do that clinical exchange with a variety of partners.
It is also all about sustainability. Once you create a system like this with any kind of funding, if you can't continue to provide the level of service that addresses the community and that is sustainable — the road to hell is paved by two-year grant funding projects that were amazingly great and then died. So it was important to have something that would be able to continue looking at Medicaid, Medicare, dual eligibility, and what would be of value to the payers.
When we released the RFQ [request for quotes], we got over 30 letters of interest from different organizations and eight viable submissions that we had to review, and any one of them would have been a great choice. One of the things that made 4medica stand apart was how consent would be handled. The 4medica solution almost read our minds in terms of what our wish list would be for a consent solution. It actually has a remarkable consent engine that not only allows you to dial up a library of different consents based on the organizations that you're working with, but also has an excellent patient portal and following what SAMHSA laid out a few years ago for the consent-to-share model for Part 2 data, it gives the individual the ability to refuse consent.
The other thing that was super important to us was that we're bringing together domains of practice that haven't historically had ways of interacting. This happens every day in Chicago: an ambulance pulls up from a health system that is discharging someone that should really be going to a skilled nursing facility or transitioning their care to a nursing facility, but that's not possible for this individual, so they're bringing them to a shelter. And because of their HIPAA constraints and the fact that there's no safe way to share information or data-sharing agreements between those organizations, they basically ask the shelter providers, can you take this person and we can't tell you about their condition. The patient has to self-report what their condition is and what medications they may have or what limitations they may have. The shelter provider has to take this person into a congregate site, and the person may not tell them whether they are on anti-psychotics or who will be responsible for making sure they take their medication.
HCI: So does the CIE overcome that limitation about being allowed to convey clinical information to the shelter site?
Mikels-Carrasco: For the continuity of care, even social care and social care inclusion, HIPAA does have provisions for what information can be shared, and it’s the minimum necessary. But in 4medica, the clinical and social care are so well integrated that the shelter provider doesn't need to see the clinical record. They don't need to get into the EHR to see a patient’s labs. The social care provider is going to get a summary of the clinical information with what is necessary for this social care provider to understand about this patient. It might say this individual suffers from Type 2 diabetes. They need insulin on a certain schedule, and the insulin must be kept in a refrigerated environment. The system interprets for them what is necessary for them to know, to assess whether they can care for that person without exposing the entire clinical record.
HCI: In the CIE pilot, have these FQHCs and shelters already been working together or are these new relationships?
Mikels-Carrasco: The FQHCs have been caring for the people in that respite program already. This is just providing them a data-sharing initiative to improve the communication between the shelter and the FQHC. Until now, the FQHCs have documented in their EHR but not had a good way to share information with the social providers.
HCI: What's the timeline for the project and where are you in the process now?
Mikels-Carrasco: We're in the process of finalizing the contract with 4medica. We're going to begin implementation through the first quarter, and we already have the pilot sites that we're walking through standardized assessments of what their technical resources are. Do they have some kind of client care platform? What are they documenting on today? Some of them are just using Excel. This will allow them a portal where they'll have role-based access for providers to go in and establish the relationship with that patient or client, and then be able to administratively use the 4medica platform if they don't have something else. So in some ways, this introduces a whole new level of technical infrastructure to them for free that they didn't have for their workflows before, and then immediately that information is available to the rest of the care team.
HCI: You mentioned earlier the challenges around grant funding cycles. Is this a grant-funded project? Do you need to get Medicaid and/or Medicare payment involved to make it sustainable?
Mikels-Carrasco: This faces the same thing that HIEs have faced forever — sustainability. The answer to your first question is that the city originally used a small part of their COVID-19 CDC funding to participate in the design of this project. Cook County has leveraged several million dollars in ARPA funds to stand up the CIE and establish the initial network. But ARPA funds expire at the end of 2026, and we have had a business planning and sustainability team working since the beginning of last year to help build out a model. This is building scaffolding off a lot of work that's been done in philanthropy, by government, by social service agencies for decades in the region, and it's to facilitate what they're doing and integrate and align with that, so there are multiple value propositions to different audiences — healthcare being a big one.
We'll also be receiving admit/discharge/transfer event notifications from the state. Sometimes there are empty beds at shelters and other facilities waiting for the person who's next up on the list, but nobody knows where they are. So this is going to increase the patient visibility for the social sector if that person's in healthcare somewhere. But it's also going to create the opposite for healthcare and payers and Medicaid, which have beneficiaries or patients who are lost to care and they can't close the population health metrics on this person, because they are discharged but the healthcare providers don’t know if they are in a shelter or not. Now they can. We can get them connected back to services, or we can get them into that next unit, because we know where they are. So it's about a whole set of value propositions.
