Data sharing at the state and local levels requires more resources

Joshua Sharfstein, Associate Dean Johns Hopkins Bloomberg and former secretary of the Maryland Department of Health from 2011 to 2014 said that at the beginning of his stay in Maryland, half or two-thirds of hospitals were connected to share data, and the data often only provided information for clinical examination, such as whether a patient had passed a computerized tomography in another hospital.

“The leaders of this system came in and said, ‘We’re looking at this as a clinical program, but we don’t see where the money could come from to build it for the entire state,'” Scharfstein said Tuesday during an Allison event. institute.

Scharfstein and his partners issued an ultimatum to the leaders—he and his team would get hospital systems with the governor’s help, funding would be secured through Medicaid or other means, and a provision would be signed to share health information.

In turn, leaders will have to double the size of their council and add members of the public to it, add a provision in the bylaws that allows the Secretary of Health to destroy the council if it does not act in the interests of the people of Maryland, and the service will be called a public health benefit, not just a clinical program.

“It really was a deal between us and the Health Information Exchange (HIE) system,” Scharfstein said.

Simplified data connectivity has been more challenging in Los Angeles County, especially during the COVID-19 pandemic.

Barbara Ferrer, director of the Los Angeles County Department of Public Health, said there are four main data needs to analyze what happened during the COVID-19 pandemic in a county of more than 10 million people:

1. Who is sick and where do we have outbreaks, by sector and geographic region?
2. How well do interventions, including vaccines and other interventions, work?
3. What changes have our interventions made, including through telemedicine and mobile teams?
4. What do workers and residents need and what do they think?

“I think the worst thing we do in this last area is like we don’t care. But we don’t care. But when you hear people talk about data, even all of us, we’ll talk about interoperability. talk about the datasets we have. But the data we really need to become trusted people in our communities is data about how people feel, what they think they need, and how we can be of service?” Ferrer said.

Anthony Eaton, senior vice president of programs and partnerships at the California Foundation, says that when he was an Alameda County public health officer, he registered all births and deaths, which allowed him to be more focused on using data for public health.

“Every death certificate lists what someone died of, their race, ethnicity, location, and age. how long someone can live,” Eaton said.

However, Eaton and his team wanted more specific data, but hospital systems refused to share it due to a lack of confidence that public health would protect the data.

“It kind of showed how little leverage there is in public health,” Eaton said.

Claudia Williams, former CEO of Manifest MedEx and former senior adviser for medical technology and innovation at President Obama’s Precision Medicine Initiative, says a critical component to improving health outcomes is access to private and anonymized data that is not in a jurisdiction. public health.

“We will never be able to reach our big health improvement goals if there is no access to data that will allow us to get insight before anything else happens,” Williams said.

All panellists agreed that changes to the state health data ecosystem are needed for the benefit of public health, but more resources are needed to ensure data interoperability becomes a reality.

“This work is not possible without resources and needs to be maintained over a long period of time,” Ferrer said. “We need long-term financial funding from the federal, state and local levels. We must have money.”

Eaton said: “We don’t have a national health care system. We have a federal health care system. So we have a federation of 50 states. And this is embedded in a kind of relative distribution of power, the ability to make decisions. the government can’t make decisions that the feds have to follow, and that’s problematic. So the leadership for that needs to come at the state level.”

Scharfstein argues that public health outcomes need to be prioritized as it is not only about meeting patients, but also about empowering people who can work with their communities. He stressed the need to change the environment that contributes to poor health.

“Governments need to create a data infrastructure that can be used not only for public health, but also for clinical research,” Williams said. “This is a public good. We must invest in it as a public good. We need to align all of our policy levers and public health needs to benefit from this.”