Experts discussed the importance of considering patient and provider perspectives when tackling concerns around data collection and sharing.

From digital platform capabilities to data exchange standards, healthcare interoperability has often focused on the technological aspects of systems that exchange information with each other. But what about the people at the center of healthcare? Consider the experiences of a physician trying to learn more about a patient’s medical history, or a patient filling out intake forms for the umpteenth time.

During HIMSS22’s HIMSS Digital sessions this week, experts addressed concerns around security, workflow and equity that take into account the perspectives of providers and patients. It’s not enough to rely on an electronic health records vendor or some other third-party partner to address interoperability issues.

“We can’t leave it to the EHR vendors,” said Victoria Tiase, director of research science at New York-Presbyterian Hospital, during one session. “We can’t wait for someone else to solve this. We need to bring everyone together to figure out how to get this done.”

1. Health IT Solutions Need to Center People

Dr. Steven Lane, clinical informatics director for privacy, information security and interoperability at Northern California-based Sutter Health, shared his own experience with interoperability failure. He was scheduled to perform a surgery in a hospital that was not in his home system, but during pre-op, the nurse could not access his records from the home hospital, even though the systems were supposed to be connected.

This underscores one reason that clinicians need to be actively involved in the creation of interoperability solutions that are supposed to improve their workflows, Tiase said.

“We need to ensure that our patients and clinicians are involved as these products are being designed and developed. And that’s really not happening right now,” she added. “It’s being presented to them once it’s solved, so I think really shifting that paradigm a bit is going to be very important, especially that patient piece. Because as our patients become more educated around data sharing possibilities, I think they’re going to be great influencers in making sure we get this right and figure out some of those barriers and struggles.”

Providers will need more education and training in communicating issues around data to patients because patients are asking more questions that frontline clinicians may not be ready to answer, Tiase said.

As care delivery moves beyond a hospital setting, said William Gordon, director of solution and experience for digital care transformation at Massachusetts-based Mass General Brigham, patients will expect the data that’s being created and captured to be seen and assessed by their care team. Therefore, data aggregation and visualization need to be more purposeful.

It’s less about individual data elements and more about how providers “synthesize, contextualize and really summarize the data in a way where it’s now getting to that information and knowledge piece of that data continuum, so that it can really enhance the decision-making and not create extra burdens,” Tiase said.

2. Integrate Security from the Beginning

During her keynote address, Florence Hudson, executive director of the Northeast Big Data Innovation Hub at Columbia University, highlighted the hurdles healthcare organizations still face on the road toward interoperability, especially around security.

“We want to enable interoperability, we want to enable this digital transformation, but we want to do it safely,” she said. “We need to protect the humans.”

Increased connectivity brings risk in healthcare, Hudson said, especially since medical devices have vulnerabilities that can be exploited with immediate, sometimes fatal consequences.

She explained the TIPPSS paradigm — which deals with trust, identity, privacy, protection, safety and security — and said cybersecurity needs to be a baked-in consideration for interoperability.

“We really need a defense-in-depth strategy. Hardware, firmware, software and service level, and we need to involve policy and culture,” Hudson said.

When healthcare organizations reflect on their digital transformation journeys, Hudson said, they should “think about why you’re doing it, what are the potential benefits, and what are the risks? And think about how you enable the interoperability.”

She highlighted expertise on connected medical device security from Kevin Fu, acting director of medical device cybersecurity at the U.S. Food and Drug Administration’s Center for Devices and Radiological Health; literature and workshops from IEEE; and a book she edited, titled Women Securing the Future with TIPPSS for IoT.

3. Data Means Nothing Without Concrete Action

During a session on health equity, Dr. Lisa Fitzpatrick, founder and CEO of community-centered health media company Grapevine Health, said that she has noticed a growing interest in collecting previously unreported or underreported data.

“A lot of organizations are focused on collecting social determinants of health data,” she said. “That’s all important. But to achieve health equity, we actually have to act on the data. So, to me, the accountability also has to include how we are holding organizations accountable for looking at their data and using that data to implement interventions that actually get us to health equity or move us along this continuum toward health equity.”

It’s not enough that a payer may be collecting data on disparities in maternal health outcomes. Does that payer offer health plans that would reduce those outcomes? Are they seeing improvements in maternal and neonatal health after collecting such data? What are the tangible results coming out of this data collection?

“Digital health access is already at an imbalance,” Fitzpatrick added. “It’s not too late for us to start thinking about how we enable access to these tools for underserved communities.”