Dissecting digital data for meaningful healthcare information

The University of Michigan Health System has 85,000 distinct fields in its patient records, and for Julia Adler-Milstein, Ph.D., an assistant professor of health management and policy at the university, the idea of sharing all that under the umbrella of interoperability is a nonstarter.

Even if technology actually enabled that level of sharing, she said, it’s unnecessary.

“We keep saying we need interoperability but we have not done a good job of saying it means this,” she said.

The typical electronic health record (EHR) can collect reams of data on any given patient. But as technology moves closer to enabling caregivers to share that data in a seamless electronic exchange, it leads healthcare officials to question what, and how much, data needs to be shared; and how will the technology provide required data while blocking unnecessary or restricted information.

“There’s a lot of negotiations and hard work to figure out what works so data gets to the people who need it and stays out of the hands of those who don’t,” Adler-Milstein said.

Part of the challenge is the volume of data being produced on each patient. Sharing all that data is not always helpful, said Wanda Filer, MD, MBA, FAAFP, president of the American Academy of Family Physicians.

“The EHRs and [health information exchanges] need to make it easy for clinicians to share the data that is clinically relevant to patient care. What won’t work is to just default to a standard approach that throws everything into the continuity of care document and includes non-clinically relevant data,” she said.

Another challenge is accommodating federal and state laws as well as patient requests that either dictate or block access to data, Adler-Milstein said. The official term for treating some data sets differently from other pieces of data is “data segregation.”

She noted that’s particularly complex as some states require patients to opt out of healthcare data exchanges while other states require patients to opt in. Additionally, patients have rights about accessing their data as well as restricting others’ access under the Health Insurance Portability and Accountability Act (HIPAA) as well as other laws. For example, federal regulation 42 CFR Part 2, which applies to all records relating to substance abuse treatments, requires that clinicians obtain written consent to share this information.

Filer said current systems don’t offer a lot of control on this front.

“It is safe to assume the EHR does not provide many options for this purpose, and those options are not easy and quick to exercise. There are default settings and patient preference choices that are not easy to incorporate in current EHRs,” she said.

Adler-Milstein made similar observations: “What we’re seeing right now is a real patchwork. Most providers are taking on that burden of asking patients [about what they want to share] and also educating patients around the choices they’re making. That’s an additional thing we’re asking provider organizations to do when they’re already so busy. There is a lot of variability on how well that’s done.”

Adler-Milstein said the healthcare community will need to use technology to solve this complex challenge as interoperability moves forward.

“We’re trying to figure out the framework to figure out different preferences that can be rolled out at scale,” she said.