One of the Top Tech Trend stories I wrote this year for Healthcare Informatics focused on data sharing across sectors to better cope with patients’ complex medical, behavioral, housing, educational and social needs. Last week I saw a webinar presentation sponsored by the National Center for Complex Health and Social Needs on key lessons for collaborating on data sharing. Several organizations presented on working at the grass roots level to make those connections, both interpersonal and in terms of interoperable data. They provided some very interesting examples of how setting up data-sharing arrangements requires ingenuity and persistence.
One of the people I interviewed for that earlier story is Alison Rein, senior director of evidence generation and translation for Academy Health in Washington, D.C. She leads the Community Health Peer (CHP) Learning Program, a partnership with the Office of the National Coordinator for Health IT (ONC) to establish a national peer learning collaborative of 15 communities to address specified population health management challenges through increased sharing and use of electronic data.
She told me that health systems don’t have as big an impact as they think they do on the real things that drive cost. Instead, she said, “They need to figure out how to work with others outside their system if they really want to thrive in a few years. It is no longer OK to spend an increasing proportion of our gross domestic products on healthcare services without getting any better outcomes.”
One of last week’s presentations was by an organization that is part of the CHP Learning Program. The Providence Center for Outcomes Research and Education (CORE) in Southwest Washington state is building a shared data system that will aggregate public records, insurance claims, and public health data for community-based population health management. They are creating the infrastructure to conduct a multi-sector analysis that brings together data on healthcare encounters, housing assistance, school attendance, and corrections to identify at-risk populations.
The Providence team isn’t starting from scratch. They are working with the Healthy Living Collaborative of Southwest Washington, which has been working as cross-sector coalition for some time. Nikki Olson, associate director of CORE, said the collaborative was proud of the work it had already done, but it never had data to shape, drive and evaluate its work. “So there was an impressive level of cohesion and trust already,” she said. “They have almost 60 partners working to design initiatives that promote health equity and improve outcomes.
They began stitching together siloed systems — connecting a system that tracks homelessness in the community with the school district. “When we started talking about data with them, they were very ready to use it to drive their work,” Olson said. The CORE team started with site visits with each entity to learn what data they had, what data they had authority to share, and what data they wanted from other organizations. “We then selected a subset that were key organizations that had right administrative data we could begin connecting. A key thing was readiness to engage with what is a heavy lift.”
Sarah Bartelmann, CORE’s development program manager, said this led to a series of conversations about existing data and sharing rules. What did their data warehouse currently look like? What elements did they have? What data is shareable under federal and state law? Washington state has more stringent privacy protections than the federal government, and many agencies have their own interpretations, she said. As they looked at overlapping populations between groups working on homelessness, healthcare and education, each group had its own definitions of priority populations it wanted more data about. Some organizations wanted help with their own data as well as cross-sector data use cases.
Another person I spoke to for the Tech Trend article is Andrew Hamilton, chief informatics officer of the Alliance of Chicago Community Health Services, and he also spoke at this online meeting in a presentation about the Alliance’s Childhood Lead Hazard Project. He and Nivedita Mohanty, M.D., the Alliance’s chief research officer and director of evidence-based practice, gave a presentation about their work to bring lead exposure prevention to federally qualified health centers in their region. They worked with the Chicago Department of Public Health to bring several data sets together to map lead exposure and created alerts. When infants and children come into a clinic from one of those neighborhoods, the provider gets an alert and can begin abatement strategies. “This focus is proactive by sharing data early on to predict risk for lead poisoning,” said Mohanty. This involves combining several data sources to drive a predictive model based on the child’s current address. “We take that model and give it to providers to run risk analyses from the clinical decision support tools in the EHR,” she explained. A form in the EHR also will make risk data available to prenatal providers, so they can know if their patient is in a high-risk lead area.
The final example came from the Camden Coalition of Healthcare Providers in Camden, N.J., where they are working to share data between health providers and jails.
Stephen Singer, senior manager of analytics and information architecture, said one key to success is trying to engage stakeholders as long-term partners. “We look for multiple ways to involve them in meaningful pieces of the interaction,” he said, “not just to get their data. If you are new to the process of cross-sector data sharing, it can look kind of intimidating, he added. There are technology challenges, privacy and security issues, and some loss of control. “So we have to be not just taking data in, but also giving some out. Data can help facilitate the relationships.”
Here is the use case Camden Coalition sought to solve. It had a team of clinicians in a “housing first” program working on homelessness issues. When they went looking for their clients, sometimes they found out they were in jail. So they wondered how they could get ready access to jail arrest, booking and release data.
“Instead of talking to lawyers about how to share the data, we got at the jail data by making public records requests,” Singer explained. “In New Jersey, that data is a public record, but we had to get it in a form we could actually use it. A third party vendor runs the database for admissions and discharges. They got the training manual for that software and went through the data fields to capture what they needed. “Simple, basic, tedious spade work created the new knowledge to link systems,” he said. “There was useful information in the jail data. It helped us with linking the same individuals across systems, and the jail had something we had nowhere else — several aliases that clients went by.” That gave the clinicians a wider set of names and made it possible to link people across hospitals. “We didn’t have a full picture unless we knew when they were incarcerated,” he said. “It gave us a much richer picture of those clients."
A conference on the topic will be held this fall in Los Angeles. “Putting Care at the Center" is the annual conference of the National Center for Complex Health & Social Needs. It will run from Nov. 15-17.