Making health data more accessible to patients – not to mention doctors and health plans – is a priority for all hospitals and health systems today, as the final Centers for Medicare and Medicaid Services Interoperability Rule mandates patient access.

But patients across the country know getting access to their health information is often challenging. In fact, as of 2020, only 60% of individuals nationwide reported being offered a patient portal for their data.

The good news is that with the appropriate technology foundation of APIs and data-sharing practices, the promise of true interoperability is not just possible but playing out in the real world, said Jean Ross, RN, cofounder and CEO of Primary Record, a patient information app.

We interviewed Ross and Dr. Ashley Moss, the founding physician of Pediatric Care Advisors, a Primary Record user, to discuss why greater data access is critical for patients and the entire healthcare industry, the kind of technology foundation hospitals and health systems need to share data with patients, data-sharing practices provider organizations must put into place to appropriately and safely share data with patients, and Moss' real-world example of bridging the gap between primary care and specialists for medically complex kids to ensure their care is easier to navigate for their families.

Q. Please explain why greater data access is critical for patients and the entire healthcare industry.

A. Jean Ross, RN: Greater data access is critical for the healthcare industry because it enables better health outcomes by including patients and their caregivers as active partners in care. With expanding healthcare choices, greater data access allows patients to navigate the system more freely, sharing their information with hospitals, community clinics and schools.

There is a transformative power of data in the hands of patients and families. I truly believe the key to driving the next century of meaningful innovation and change within the healthcare industry lies in the data accessibility we provide to our patients and caregivers. While interoperability between hospitals and providers is crucial, it is only part of the solution.

I have witnessed firsthand as a nurse how essential accurate health information is for caregivers, whether it's a spouse or a small homecare provider. These stakeholders are often overlooked as they remain disconnected from the broader healthcare ecosystem, missing a critical opportunity to ensure coordinated patient care.

As care becomes more decentralized and community-centered, the challenges of care coordination grow, particularly for families managing complex chronic conditions. With an aging population and a shrinking clinician workforce, our healthcare system must be ready to innovate to do more with less.

Families are increasingly bearing this burden, and without secure, seamless access to health data, they are left out of the conversation, struggling to manage health conditions effectively. The lack of family and community-based access to health information is a critical gap in our current system.

Empowering families with access to health information is a way to fill this gap immediately to ensure that every patient receives coordinated and comprehensive care, regardless of their ZIP code or circumstances.

Q. What kind of technology foundation do hospitals and health systems need to share data with patients?

A. Jean Ross, RN: To effectively share data with patients, hospitals and health systems must build a technology foundation centered on interoperability, driven by rigorous data standardization and secure exchanges. The adoption of HL7's FHIR (Fast Healthcare Interoperability Resources) standards is crucial in creating a shared language across different systems, enabling the seamless flow of health information throughout the healthcare ecosystem.

For the full potential of patient care to be realized, it is imperative all stakeholders commit to these standards, understanding this unified approach is essential for the system to function effectively for everyone, at every level of care.

Moreover, as systems like Epic have shown by backing patient access, there is growing recognition that engaging patients directly in managing their health data is key to addressing larger healthcare challenges. By including patients and families as active participants in health data management, health systems open the door to innovation and optimizing the use of healthcare staff.

Rather than relying solely on overburdened physician offices or case managers, health systems should recognize the pivotal role patients and families play in collecting and sharing health data.

For instance, a common pain point for parents is the frustrating process of tracking down vaccination records from various doctors and clinics, then coordinating with a school to ensure their child can start on time. By providing parents or guardians with a centralized platform to collect their child's health records from point to point in healthcare, we can prevent missed days of work and reduce the burden on front office staff, who often receive panicked calls and must accommodate last-minute appointments to get paperwork signed.

Finally, true data ownership goes beyond simply giving patients access to their information; it involves providing them with the tools to organize, search and understand their data in the moments that matter most.

Patients should be able to easily compile relevant information from their entire health history and access it when needed, whether for a new specialist, a telehealth consultation or a homecare provider in a rural setting. This capability is essential for improving care coordination, reducing redundant tests, and ensuring every provider involved in a patient's care has a complete and accurate picture.

By focusing on these aspects, health systems can move beyond the idea patient access means dumping data onto patients, and offer a more nuanced, secure and patient-centered solution that empowers individuals and supports the needs of today's families and the broader healthcare ecosystem.

Q. Please detail the data-sharing practices that provider organizations must put into place to appropriately and safely share data with patients.

A. Jean Ross, RN: To appropriately and safely share data with patients, provider organizations must recognize that patient access extends beyond simply providing a patient portal. It involves educating patients and their families about what they are accessing and how to use that information effectively.

This education should be integrated into healthcare workflows, making it easier for patients to understand the implications of signing consent forms and how their health data moves through the system. While patient portals are becoming more common, there's a significant opportunity to verify identity and proxy access on the front lines to help overcome one of the biggest hurdles of data sharing: identity verification.

Provider organizations can be leveraged to ensure a process for verifying and granting permission, as well as educating families about shared or proxy access, clearly defining the roles of those viewing or accessing information.

In addition, there is a need for greater transparency around who is viewing health information and when, especially if patients are to consent to easier transmission of their data. As the CARIN Alliance states, "Healthcare organizations should provide clear, understandable and accessible information to patients about how their data is being used, shared and protected."

We can build greater confidence and trust by providing visibility into when and how our information is accessed. By implementing transparency measures such as audit trails, provider organizations can build trust and give patients visibility into who is accessing or modifying their health information.

Finally, provider organizations must be ready to invest in ongoing patient education and support, helping individuals understand how to safely manage and share their data. By combining secure practices with education, provider organizations can create a more transparent, patient-centered approach to health information management.

Q. Primary Record and its partner 1upHealth have helped a pediatrician working with Children's National in D.C. bring primary care and specialists together for medically complex kids to ensure care is easier to manage for their families. Please explain how this happened and the result.

A. Dr. Ashley Moss: As a D.C.-based pediatrician seeking to bridge the gap between primary care and specialists for medically complex children, I needed a technology that would allow me to consolidate all of my patients' critical information – medications, conditions, their notes – and help parents make sense of it, preparing them for their visits with the right questions and a tailored path for their child's unique needs.

This approach was born out of my observation that the growing disconnect between primary care and specialists often left families overwhelmed and uncertain about their child's care, a gap I was determined to fill.

In my conversations with larger health systems and group practices, I found overwhelming support for this new role I was developing. Pediatric specialists and community pediatricians, burdened by an increasingly siloed and inefficient electronic health record system, were eager to collaborate to improve care.

These professionals, particularly those working with medically complex children, recognized the need for a more integrated approach to patient care. However, as an independent clinician no longer part of a larger system, I faced the challenge of effectively performing this critical role without the information infrastructure typically provided by large health systems.

I relied on families to access each patient portal individually, but the process was inefficient and added stress to already overwhelmed families.

By using an app designed for families to have one secure place to organize, collaborate and share health information, I was able to provide the consultative services I always envisioned. Through this experience, I have seen firsthand the challenge of inconsistent standards and data retrieval through patient access FHIR APIs.

However, by putting the right tools into the hands of families, I was able to work with my technology partners to facilitate a more efficient consolidation of medical information, making the navigation of complex children's care more manageable.

This experience highlights not only the innovation already happening in patient access but also the growing need for solutions that truly empower families and community providers to navigate our complex healthcare system effectively.

Follow Bill's HIT coverage on LinkedIn: Bill Siwicki
Email him: bsiwicki@himss.org
Healthcare IT News is a HIMSS Media publication.