Making health data more accessible to patients—not to mention physicians and health insurers—is a priority for all hospitals and health systems today, as the Centers for Medicare and Medicaid Services Interoperability Rule final rule mandates patient access.
But patients across the country know that accessing their health information is often difficult. In fact, as of 2020, only 60% of individuals in the entire country indicated that they were offered a patient portal for their data.
The good news is that with the right technology foundation of APIs and data sharing practices, the promise of true interoperability is not only possible, but becoming a reality in the real world, said Jean Ross, RN, co-founder and CEO of Primary Record, a patient information app.
We interviewed Ross and Dr. Ashley Moss, founder of Pediatric Care Advisors and a Primary Record user, to discuss why better access to data is critical for patients and the healthcare industry as a whole. We also discussed the technology foundations hospitals and health systems need to share data with patients, and what practices providers need to implement to share data with patients appropriately and securely. Moss also provided a real-world example of how he bridged the gap between primary care and specialists for medically complex children to help their families navigate care more easily.
Q. Can you explain why better access to data is critical for patients and the entire healthcare sector?
A. Jean Ross, RN: Greater access to data is critical to the healthcare industry because it enables better health outcomes by engaging patients and their caregivers as active partners in care. As healthcare choices increase, greater access to data allows patients to navigate the system more freely and share their information with hospitals, clinics, and schools.
There is transformative power in the hands of patients and families. I truly believe that the key to driving the next century of meaningful innovation and change in healthcare lies in the accessibility of data we provide to our patients and caregivers. While interoperability between hospitals and providers is critical, it is only part of the solution.
As a nurse, I have seen firsthand how critical accurate health information is for family caregivers, whether it’s a spouse or a small home care provider. These stakeholders are often overlooked because they remain disconnected from the broader health care ecosystem, missing out on a critical opportunity to ensure coordinated patient care.
As care becomes more decentralized and community-based, the challenges of care coordination become greater, especially for families managing complex chronic conditions. With an aging population and a shrinking clinician workforce, our health care system must be prepared to innovate to do more with less.
Families increasingly bear this burden, and without secure, seamless access to health data, they are left out of the conversation, struggling to effectively manage health conditions. The lack of family- and community-based access to health information is a critical gap in our current system.
By providing families access to health information, we can immediately fill this gap and 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 focused on interoperability, driven by rigorous data standardization and secure exchanges. Adopting HL7’s Fast Healthcare Interoperability Resources (FHIR) standards is critical in creating a shared language across systems, enabling the seamless flow of health information throughout the healthcare ecosystem.
To realize the full potential of patient care, it is essential that all stakeholders adhere to these standards. They realize that this uniform approach is essential to make the system function effectively for everyone, at every level of care.
Additionally, as systems like Epic have demonstrated by supporting patient access, there is growing recognition that directly involving patients in the management of their health data is key to addressing larger healthcare challenges. By involving patients and families as active participants in health data management, health systems open the door to innovation and optimized care workforce utilization.
Rather than relying solely on overburdened physician offices or case managers, health systems should recognize the critical role patients and families play in collecting and sharing health data.
For example, a common pain point for parents is the frustrating process of tracking down vaccination records from multiple doctors and clinics, and then coordinating with a school to ensure their child can start on time. By providing parents or caregivers with a centralized platform to collect their child’s medical records from point to point in the healthcare system, we can prevent missed work days and reduce the burden on front-office staff who often receive panicked phone calls and have to make last-minute appointments to get paperwork signed.
Finally, true data ownership goes beyond just giving patients access to the data. It’s about giving them the tools to organize, search, and understand their data when it matters most.
Patients should be able to easily gather relevant information from their entire medical history and access it when needed, whether it’s with a new specialist, a teleconsultation, or a home health provider in a rural setting. This capability is essential for improving care coordination, reducing redundant testing, and ensuring that every provider involved in a patient’s care has a complete and accurate picture.
By addressing these issues, healthcare systems can move beyond the idea that patient access is a matter of dumping data on patients and provide a more nuanced, secure, and patient-centric solution that empowers individuals and meets the needs of today’s families and the broader healthcare ecosystem.
Q. Can you provide a detailed description of the data sharing practices that healthcare providers must implement to share data with patients in an appropriate and secure manner?
A. Jean Ross, RN: To share data with patients appropriately and securely, healthcare providers must recognize that patient access goes beyond simply providing a patient portal. It’s about educating patients and their families about what they can access 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 is a significant opportunity to verify identity and proxy access on the front lines to overcome one of the biggest barriers to data sharing: identity verification.
Healthcare providers can be involved in creating a process for verifying and granting consent, and educating families about shared or proxy access, and clearly defining the roles of those viewing or accessing the information.
In addition, there is a need for greater transparency about who is accessing health information and when, especially if patients are required to consent to easier transfers of their data. As the CARIN Alliance states, “Healthcare institutions must provide patients with clear, understandable and accessible information about how their data is used, shared and protected.”
We can create more trust and assurance by providing insight into when and how our information is accessed. By implementing transparency measures such as audit trails, healthcare providers can build trust and give patients insight into who is accessing or changing their health information.
Finally, providers must be willing to invest in ongoing patient education and support to help individuals understand how to manage and share their data securely. By combining secure practices with education, providers can create a more transparent, patient-centered approach to health information management.
V. Primary Record and its partner 1upHealth helped a pediatrician working with Children’s National in DC bring together primary care and specialists for medically complex children to make care easier to manage for their families. Explain how this happened and the results.
A.Dr. Ashley Moss: As a pediatrician in Washington DC, I wanted 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 the important information about my patients (medications, conditions, their notes), and help parents gain insight into this information and prepare them for their visits with the right questions and a personalized pathway for their child’s unique needs.
This approach was born from my observation that the growing gap between primary care and specialists often leaves families feeling overwhelmed and uncertain about their child’s care. I wanted to fill this gap.
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 medical record system, were eager to collaborate to improve care.
These professionals, particularly those working with medically complex children, saw the need for a more integrated approach to patient care. However, as an independent clinician who is no longer part of a larger system, I was challenged to effectively perform this critical role without the information infrastructure typically provided by large health systems.
I trusted that families would be given individual access to each patient portal, but that process was inefficient and added stress to already overburdened families.
By using an app designed for families to have one secure place to organize, collaborate, and share health information, I was able to deliver the consultative services I always envisioned. Through this experience, I saw firsthand the challenge of inconsistent standards and data retrieval via FHIR APIs for patient access.
By providing families with the right tools, I and my technology partners were able to consolidate medical information more efficiently, making the complex care of children more manageable.
This experience highlights not only the innovation already occurring in patient access, but also the growing need for solutions that truly empower families and caregivers to effectively navigate our complex healthcare system.
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