The State of California is leading a massive transformation of its Medicaid program. The California Advancing and Innovating Medi-Cal (CalAIM) program, launched this year, is designed to create an easier pathway to support care for people outside of traditional healthcare settings and help address enrollees’ health-related social needs.
Underpinning this change is an effort to rethink how healthcare entities and social service agencies share data and solve stubborn interoperability issues that find many providers still shuffling paper and sending faxes. Signed by Gov. Gavin Newsom on July 27, 2021, AB133 called for the creation of a Data Exchange Framework, to be established by July 1, 2022, that includes a single data-sharing agreement and a common set of policies and procedures that will govern and require the exchange of health information among large healthcare entities and government agencies by Jan. 31, 2024. (Smaller provider organizations will have until 2026 to comply.)
In addition, by Jan. 31, 2023, the California Health and Human Services Agency (CalHHS) and the California State Association of Counties will encourage county health, public health, and social services providers to connect to the Data Exchange Framework—with all state and local public health agencies exchanging health information in real time with participating healthcare entities.
John Ohanian, chief data officer and director for the Center of Insights and Innovation at CalHHS, is leading the effort to create the Data Exchange Framework. He came to state government in 2020 after serving for seven years as president and CEO of the community information exchange in San Diego, so he has a keen understanding of the challenges around sharing data between community-based organizations and healthcare providers. “It's an exciting time for us,” he says. “In addition to CalAIM, we have the Children and Youth Behavioral Health Initiative and a Master Plan on Aging. We can help more individuals at their time of crisis. Having this data-sharing framework is going to allow us to deliver much more person-centered care.”
As part of CalAIM, in 2023 the state is planning to roll out a population health management program, and the Department of Health Care Services (DHCS) is planning to offer a statewide population health management service designed to collect and integrate disparate information to support DHCS’ vision for population health management. The state says the service will provide Medicaid managed care plans, providers, counties, plan members, and other authorized users with access to more timely, accurate, and comprehensive data on members’ health history and needs, which the state believes will help improve care, promote integrated care, and avoid duplicative processes.
In a May 2021 interview with Healthcare Innovation, Melissa Buckley, director of the California Health Care Foundation’s Health Innovation Fund, stressed why widespread data exchange is so crucial. “Just think back to the Affordable Care Act. It moved many, many people into managed care and the whole system toward value-based payment. Those things got people focusing on integrated care, whole-person care, and population health management, and data exchange underlies all of that,” she said. “All our lives touch so many systems, whether they’re medical systems or social service systems. There’s no way to get a handle on where and how people are being seen. We haven’t historically focused as much on the technology piece, but it is absolutely foundational to being able to understand and deliver appropriate care.”
Over the past decade, California has struggled to create a statewide health information exchange entity, and Ohanian says that is not the goal now. “In California, we've had a lot of health information exchange taking place over the last 10 to 15 years. We have some health information being exchanged; what we don't have is all the needed and usable information being exchanged,” he says. “We've been very clear from the beginning that our intention at the state is not to build technology, but it's really to create the rules of the road for how all of it should work together. There is a mandate in AB133 to share health and social information, and there's a timeline to get people on board.”
Still undecided are issues such as the shape of any governance framework or penalties if healthcare entities do not live up to the data-sharing agreement.
Behavioral health providers, community-based organizations and social service agency representative in the stakeholder advisory group have helped identify the challenges to data exchange specific to their fields, Ohanian says. “We're building upon something that's already pretty robust in some areas of the country. I think the key word that we put in our vision is ‘usable.’ We want to ensure, overall, that something complex like this doesn't get away from the overall intention of why we're doing this — so that individuals have access to all their information, and that our providers have access to usable and appropriate information when caring for people.”
The approach is perhaps similar to that of the State of New York, where there are regional health information organizations (RHIOs), but one central organization that makes policy that those RHIOs adhere to.
Ohanian says the goal is to align with federal policies and standards wherever possible, but California won’t shy away from innovating where there are gaps. “We don't want to create standards just for the sake of creating standards,” he says. “Our goal is to align with TEFCA. However, social service information is a new area of exchange, so we are looking at where there are and aren't standards, and we will fill in those gaps. Another example is the interoperability and patient access rule, which on the federal level required Medicare Advantage and Medicaid managed care plans to share information with patients. But we don't have that requirement with state market-based plans, so that's an area where we'll design that into the framework to close that gap between state and federal.”
The Data Exchange Framework is basically going broader, faster and deeper than what's happening nationally, says Mark Savage, who was formerly the director of health policy at the Center for Digital Health Innovation at UC San Francisco and is now a consultant and the social determinants of health policy lead for the Gravity Project, an HL7 FHIR accelerator. He is a member of the framework’s stakeholder advisory group.
The vision is being articulated in a way that stresses that payers, clinics, community-based organizations and social service agencies need to be a part of the Data Exchange Framework because they're a part of providing healthcare to patients every day across all kinds of kinds of conditions, Savage explains.
“Figuring out how we connect community-based organizations and social service agencies and public health is huge,” he adds. The stakeholder advisory group was tasked by the legislature with considering how to add social determinants of health data and how to make sure that the needs of underrepresented and underserved communities are a part of the framework, Savage says. By defining the system to include public health, behavioral health, and community-based organizations that were not part of the Meaningful Use incentive program, the state is making an effort that is more comprehensive than what the federal government has tried.
“We know that the federal standards tend to be a floor, not a ceiling. California standards, especially around privacy, can go further than the national standard,” says Savage. However, he adds that the framework will likely get more people aligned operationally around applying national standards that already exist rather than addressing national standards problems that haven’t been resolved yet.
With the implementation of CalAIM, there is a recognition that we have to knit together health providers with the social service ecosystem that impacts health to achieve the outcomes that we want, says Erica Galvez, interim CEO of the nonprofit Manifest MedEx, which describes itself as a utility-style network for health information across the state.
“Those of us in this space started to recognize that you have to be really data-driven to get that right,” Galvez adds, “and in order to be data-driven, you have to have a data infrastructure that will knit together all of those disparate pieces into a single record that anyone who is supporting that individual can use.”
But Galvez adds that she doesn’t think AB133 goes far enough in terms of funding the infrastructure. “That is why we're part of a coalition that's lobbying for $95 million in state budget money to leverage federal matching funds to invest in two things: One is funding for HIE infrastructure — that kind of fabric that is so fundamental to knitting together the data, and the second is incentives for Medi-Cal providers to participate.”
In a letter to the Data Exchange Framework Stakeholder Advisory Group, Jennifer Stoll executive vice president of government relations and public affairs for OCHIN and the California Telehealth Network (CTN), also urged the Newsom Administration to target funding that allows healthcare providers, public health agencies, state agencies, and community providers to modernize health information technology systems.
“In California there remain too many providers, particularly those in underserved areas, who are not participating or are getting left behind and are not able to onboard to health information exchanges, either through national networks, vendor-based/electronic health record-based exchanges, or health information exchange organizations (HIOs),” Stoll wrote. “While there is significant health information exchange happening today in the state, data transport through the health information exchange is stymied where there are antiquated systems. As a result, it is critical that providers have the resources to adopt or upgrade electronic health record systems that facilitate data exchange.”
Another thing that Manifest MedEx hoped to see in in the framework was a stronger posture around proactive data sharing, Galvez says. “The current framework is built around a query model, where an organization requests data and then receives it. That's an important component of the data-sharing ecosystem; however, you can't query for data if you don't know that you need it,” she explains. “An example of that is when someone shows up the emergency room or gets discharged from the hospital. Their care manager, their primary care provider, the specialists who may be attending to some of their more acute chronic conditions will not know about that event unless there's proactive data sharing and ADT [admission, discharge and transfer] notifications are made available, and that's consistent with CMS policies.”
In thinking about the value of the framework, Savage suggests looking at particular use cases. He notes that one potential use case is the need for patients to have access to a longitudinal health record. “This is a perfect opportunity for that. This is what you need for longitudinal shared care plans. It’s the kind of thing you need for people with multiple chronic conditions,” he says. “Medication lists can be reconciled, so that you are not prescribing something that has adverse interactions. I think that's the kind of use case that’s important for the Triple Aim across California.”
