Clinical IT Leaders Achieve Innovation with Data Solutions
To effectively share data with patients, hospitals and health systems must establish a tech infrastructure rooted in interoperability, focusing on rigorous data standardization and secure exchanges. Adopting HL7’s FHIR (Fast Healthcare Interoperability Resources) standard is crucial to achieving this goal.
Dr. Ashley Moss, the founding physician of Pediatric Care Advisors, shared insights on the importance of making health data accessible, not only to patients but also to doctors and health plans. This is increasingly becoming a priority for healthcare providers as mandated by the CMS Interoperability Rule, which emphasizes patient access to health information.
However, patients across the U.S. still find accessing their health data challenging. In 2020, only 60% of individuals nationwide reported being offered a patient portal for their health records. The encouraging news is that with the right technological foundation—powered by APIs and data-sharing protocols—the vision of true interoperability is already taking shape.
Jean Ross, RN, cofounder and CEO of Primary Record, a patient information app, along with Dr. Moss, discussed why improving data access is critical for patients and the healthcare industry as a whole. They also highlighted the type of technology infrastructure hospitals and health systems need to facilitate data sharing with patients, the best practices organizations should adopt, and a real-world example of how Primary Record is bridging the gap between primary care and specialist care for medically complex children.
The Importance of Greater Data Access
Jean Ross, RN: Increasing data access is essential for improving patient outcomes by involving patients and caregivers as active partners in their healthcare. Greater data access allows patients to navigate the healthcare system more freely, sharing information across hospitals, clinics, and schools.
Data in the hands of patients and families has transformative potential. I believe the key to healthcare innovation lies in ensuring data accessibility for both patients and caregivers. While interoperability among healthcare providers is vital, it addresses only part of the challenge.
As a nurse, I’ve seen firsthand the importance of accurate health data for caregivers, especially those outside the traditional healthcare ecosystem. These caregivers, who are often isolated from formal healthcare structures, are crucial to patient care coordination. As care becomes more decentralized, managing complex conditions becomes increasingly challenging, especially with an aging population and a shrinking healthcare workforce.
Without secure access to health data, families are often left out of crucial care decisions. Empowering them with access to health information fills this gap, ensuring comprehensive care for all patients, regardless of their circumstances.
The Technology Foundation for Data Sharing
Jean Ross, RN: Hospitals and health systems need a robust tech foundation centered on interoperability to share data effectively. This requires adopting HL7’s FHIR standards to ensure data flows seamlessly across the healthcare ecosystem. Commitment to these standards is essential at every level of care.
Patient engagement is key to addressing broader healthcare challenges. By involving patients and families in managing their health data, health systems can unlock innovative solutions and optimize healthcare resources. For example, providing parents with a centralized platform to track their children’s vaccination records can reduce the burden on front-office staff and minimize disruptions to work and school.
True patient data ownership involves more than simply providing access. It requires offering patients tools to organize and understand their health information, enabling them to compile relevant data and share it with new healthcare providers when needed. This improves care coordination, reduces redundant testing, and ensures healthcare providers have a comprehensive picture of the patient’s health.
Best Practices for Safe Data Sharing
Jean Ross, RN: Sharing data safely with patients involves more than just offering patient portals. It requires educating patients and their families on how to access and use their health data effectively.
This education should be integrated into healthcare workflows to ensure patients understand the implications of data sharing and how their information moves through the system. Identity verification and proxy access should be prioritized, providing families with clear guidelines on who can view or access their information.
Transparency is critical in building trust. Patients should know who is accessing their health data and when. Provider organizations must implement transparency measures, such as audit trails, to give patients visibility into how their information is used. Ongoing education and support are also necessary to ensure patients manage their data securely and effectively.
Bridging the Gap in Pediatric Care
Dr. Ashley Moss: As a pediatrician in Washington, D.C., I wanted to bridge the gap between primary care and specialists for medically complex children. To do this, I needed a way to consolidate all patient data—medications, conditions, and notes—so parents could better understand their child’s care.
I collaborated with larger health systems and group practices, where I found overwhelming support for this approach. Pediatric specialists and primary care providers, particularly those working with medically complex children, recognized the need for a more integrated approach to care. However, as an independent clinician, I faced challenges accessing the necessary information infrastructure.
By using Primary Record, a patient information app, I could provide consultative services to families, helping them manage their child’s care more efficiently. This experience demonstrated the power of putting the right tools into families’ hands and highlighted the need for solutions that empower both families and healthcare providers to navigate the system more effectively.
This approach not only improves access to patient data but also paves the way for a more integrated, patient-centered healthcare system.
Conclusion
Overall, meeting CMS’ mandate for patient data access is a critical step toward a more connected, efficient healthcare system. By embracing HL7’s FHIR standards, secure data exchanges, and robust patient engagement tools, healthcare providers can empower patients and caregivers with seamless access to vital health information. This not only improves patient outcomes but also enhances care coordination, particularly for families managing complex conditions. As technology continues to evolve, the focus must remain on creating interoperable, patient-centered systems that ensure equitable access to health data, paving the way for a healthier, more informed society.
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FAQs:
Q1: What is CMS’ Patient Data Access Mandate?
A1: CMS mandates that healthcare providers must offer secure, interoperable access to patient health data.
Q2: How does patient data access benefit healthcare outcomes?
A2: It empowers patients to actively participate in their care, improving outcomes and care coordination.
Q3: What technology is essential for data sharing?
A3: HL7’s FHIR standards, secure APIs, and patient portals are vital for effective data exchange.
