Recapping the State of Healthcare Interoperability Virtual Summit: Why Engaging Patients Matters

Interoperability is more than just a government mandate to get EHR systems and other clinical applications to exchange information. It’s about taking the next step forward and using interoperability to empower patients to make their own decisions and become proactive towards their health. Furthermore, giving them the opportunity to take on a more prominent role in influencing the development of data strategies for industry stakeholders.

“Patients have to take ownership of their own care because the healthcare industry is so fragmented. They have no choice but to self-triage and go to urgent care or virtual care. This is going to happen whether the industry is willing to keep up with it or not.”

Patient advocate, Grace Vinton, said this in the closing minutes of a panel discussion during the recent State of Healthcare Interoperability Virtual Summit 2023, presented by DirectTrust and Answers Media Network.

The panel was titled “Engaging Patients, Consumers, and Care Partners in Interoperability,” and Vinton’s insightful remarks summarized the panel well. It emphasized the need for healthcare to recognize that patients often work with multiple providers. Different healthcare  providers use various electronic health record (EHR) systems that, unfortunately, aren’t great at sharing information. This often results in patients knowing more about their condition and medical history than the clinician they’re currently meeting with. 

Patients Need to Be Part of the Interoperability Conversation

Board certified patient advocate, Grace Cordovano, PhD, had some excellent insight into why organizations don’t actively seek out the patient’s voice. “We operate on the assumption that we all know these things, that we’re all patients and we’re all going to be patients. These assumptions about what people need, and what their care circles look like, are what holds us back.”

Thinking that “we are all patients” ignores the fact that the patient experience isn’t the same for everyone. A patient going to urgent care to get their throat swabbed for strep isn’t the same as a patient seeing 20-plus doctors in search of a diagnosis for a rare condition. 

And, what happens when patients aren’t part of the interoperability conversation? “They don’t even know that they’re missing out on things that could contribute to better outcomes,” said panelist Krystal Schramm, who’s the Director of American Indian & Alaska Native Engagement as well as the Senior Technical Business Analyst for the Michigan Health Information Network (MiHIN).

That’s just at an individual level. At an enterprise level, Schramm continued, organizations miss out on valuable population health insights because they don’t have a complete picture of who patients are. Without that insight, it’s difficult to address patients’ needs in more meaningful ways.

b.well believes in meeting the consumer where they are. This means allowing people to connect to the data sources they interact with to create a longitudinal health record.

Frameworks and Standards Are an Important Step Forward

One thing we have recognized as an industry is the value of coming together to develop frameworks and advance standards for interoperability. As problem-solvers and innovators, it’s important to do this work within the context of keeping patients’ needs front and center. After all, whether directly or indirectly, patients are impacted by what standards enable.

Each panelist talked about their experience with developing standards and frameworks.

  • Schramm sits on the Patient and Community Action Board for Michigan’s Collaborative Quality Initiatives. Here, the board is helping CQI manage its grant-funded initiative to improve maternal health outcomes throughout the state. “It’s not just a behind-the-scenes patient council. We’re getting them involved and making them feel like they matter.” Schramm also emphasizes the perspective of Michigan’s 12 native tribes and the challenges they face in receiving the same standard of care as other Michigan residents.
  • Vinton is a member of Carequality Advisory Council that’s helping to develop the Sequoia Project’s interoperability framework. The invitation came as a pleasant surprise to Vinton given her professional background – but not her patient experience. “I was honored that my pain could have purpose. Patients, caregivers, care partners, and consumers have real, lived experience, and they should be included in these conversations on healthcare innovation.”
  • Cordovano was part of the Sequoia Project Consumer Voices Workgroup. She called it a “profound experience” that, far from getting together once and calling it a day, met over the course of several months and had the opportunity to publish its findings. “It completely flattened the stigma that patients and caregivers don’t care. Once the awareness hits about what right patients have regarding their data hits, you can see the sparks fly. There’s curiosity and there’s questioning. They connect the dots.”
  • Jill Degraff described her work to help create the CARIN Alliance Trust Framework and Code of Conduct. They set parameters for how consumers and authorized caregivers can use open application programming interfaces (APIs) to gain digital access to their health information. And, in her role as Senior Vice President of Regulatory at b.well Connected Health, she is helping to build a FHIR-based platform that unifies healthcare data, solutions, and services in one place for patients and their families.

While each of them participated in a different working group or council, their goals are the same. We can’t achieve true data interoperability, and realize the inherent benefits of data sharing, without accountability. Standards and frameworks put into writing the exact steps an organization must take to be accountable. The best standards come from consensus – and consensus won’t be reached if patients don’t have a seat at the table.

Why Interoperability Reduces Patient Burden

As session moderator, Vinton posed a simple but profound question for the rest of the panel to think about: “Why interoperability?”

Schramm and Cordovano noted that patients move around. They may seek care from federally qualified health centers (FQHCs), tribal health clinics, community hospitals, and so on. Of course, they may travel for business or pleasure and need care thousands of miles from home.

The benefit for patients is clear. “In life-altering or life-limiting situations, if you have access to the information you need, then you can make informed and educated decisions about your care,” Cordovano said. “You never know when that rug is going to be pulled out from underneath you or a loved one, and the only way to make quick decisions is if you have immediate access to your own central source of truth.”

Providers also benefit when data follows patients, “Whatever data we get, we need to know who our patients are. What’s their story? What has happened to them? Who’s their caregiver? There are negative health consequences if data isn’t being shared,” said Schramm. 

Schramm’s remarks point to another important piece of the puzzle: Administrative burden. As an industry, we frequently address this from the provider perspective. Struggling to find information that should be readily available in a clinical application is a significant contributor to burnout. Reducing administrative burden has been a core driver of interoperability efforts. And, technology adoption as a whole – in healthcare for quite some time.

That said, we can’t ignore the administrative burden that patients face. To repeat an earlier point, this isn’t about the patients who have to tell their primary care physician about occasional visits to urgent care. This is about the patients managing 27 different portals, coordinating care among multiple specialists, or basing their care decisions not just on medical needs but also on whether they can afford a given service.

Go Beyond Identifying Needs and Empower Patients

There are obvious workflows where, with the right technology in place, patients would happily plan their care experience. Scheduling appointments, completing intake forms, requesting prescriptions, and reviewing documentation are examples that come to mind right away.

The panel agreed that it’s time to think bigger. Addressing social determinants of health is one case in point. Many organizations focus on identifying needs. Fewer have mechanisms in place to guide patients to complete tasks that arise once needs are identified. It could be getting a referral for nutrition services, for example. Or, filing out an application for disability benefits or housing assistance. There could also be cumbersome administrative tasks causing trouble. For example, gathering records from multiple health systems can take up a lot of time.

This is where granting patients access to their data and allowing them to consent to sharing it with entities they trust, becomes a valuable proposition. As DeGraff put it during the panel, “Patient consented data is a superpower for healthcare organizations.”

We can “plug and play” the right pieces that empower patients to complete necessary tasks. What’s more, we can go a step further and surface those pieces at the right time in a patient’s care journey. Thanks to the direct insight into what they need and when they need it. Finally, if we leverage patient access APIs, we position ourselves to bring in data that patients have. Traditional health systems don’t do this – whether it’s lab results, prescriptions, or even readings from remote monitoring devices.

To truly make this happen, though, we need to know what matters to patients. For solution providers, DeGraff  said, “Integrate patients within the entire product delivery lifecycle, with the consideration of the value for the patient under your use case. Critically, this will help identify what data elements may be missing in the early stages of product development.

Watch the full session here.

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