Startups Like Interoperability. Do Hospitals Feel The Same Way?

Now that the Anti-Information Blocking Rule has been in effect for over a year, healthcare providers are beginning to experience the effects of data sharing.

The Office of the National Coordinator for Health Information Technology (ONC) developed the info blocking rule to promote nationwide data interoperability. Multiple healthcare providers at the ONC’s Annual Meeting shared firsthand ways that ONC’s efforts were paying off, while stressing the need for continued info blocking enforcement.

Integrating Interoperability In Care

Making interoperability work on the ground takes some focus, said panelist Ann-Marie Yap, the Executive Director of Customer Experience and Support Services at Stanford Medicine. In Yap’s experience, developing a workflow that supports interoperability involves trial and error.

“From a technology standpoint, it’s finding all the right APIs so we can connect the dots and get the right information to enhance the care,” Yap said. But leaving an iPad with health record access in every room didn’t help nurses or patients at first, because “the closest plug to the iPad was not the closest plug to the patient”.

“We really need organizations like ONC to keep pushing for sharing data,” she added, as data breadth is “the reason why we need portals and APIs.”

Interoperability has expanded beyond hospital use already, said Deven McGraw, the lead for Data Stewardship and Data Sharing at Invitae. McGraw shared that cancer patients with a poor prognosis have difficulty finding clinical trials, but that API-based data sharing allows them to enroll quickly.

“We decided that one of our early use cases for making data work for people [would be] to take their data and match it to clinical trial inclusion/exclusion criteria,” McGraw said, “so that they could get a more specific list, including trials that were actually in their geographies that they could actually travel to and be eligible for.”

Interoperability success stories are leading to better care outcomes, according to McGraw. “A patient with bile cancer, a very rare cancer with a very poor prognosis, was matched to a trial and is actually doing very well … [and] this was not a trial that her oncologist was even aware of. She was able to find it because she had control of her data and could match it."

Primary care providers and patients both benefit from education about interoperability, explained Deborah Adair, Executive Director of Digital Enterprise Health Information Management for Mass General Brigham. 

Adair’s office heard from doctors who referred patients to substance use disorder clinics, and subsequently found themselves without access to protected health information. When Mass General contacted the affected patients about record sharing, over half of those patients consented to share records with their PCP, with many patients reporting they received more informed care as a result.

Other health systems that were quick to embrace interoperability have reported encouraging results. Lofty real-time goals for access to records turned out to be realistic, according to Dr. David Rich, Chief Medical Information Officer at WVU Medicine.

WVU Medicine found that 98% of their lab results were shared with patients on the day of the test, and 98% of their provider notes were shared upon completion; patients actually viewed 16% of these notes. Out of over 560,000 active patient portal accounts, over 210,000 individuals now access their portal in a typical month.

Patient Advocates and Interoperability

Multiple patient advocates noted that it was inherently hard to predict how any one individual would make use of interoperable data. However, patients and caregivers were using their records to advocate for themselves. 

Liz Salmi, Communications & Patient Initiatives Director for OpenNotes, described feeling as if she was in a different generation of patients because of the data now available to people with chronic conditions. Before the Cures Act, “just trying to remember the details of my treatment was terrifying,” Salmi explained, but “you don’t have to be an expert on healthcare to be able to digest your notes on your own time”. 

Kathy Sabadosa, the parent of a cystic fibrosis patient, agreed that her experience with accessing healthcare data changed over the past two decades. 

At her child’s pulmonary function lab, results are still returned on paper. But the lab’s API-driven portal has advanced to the point where it can instantly answer the test’s intended question of how a patient has progressed. Access to records helped Sabadosa “teach [her] child to self-advocate and use language associated with cystic fibrosis”.