How HL7 Data Standards Support Advance Care Planning Interoperability

Adoption of Health Level 7 International (HL7) data standards could help move healthcare away from a world of primarily paper-based advance directives to support advance care planning interoperability, according to Maria Moen, senior vice president of innovation and external affairs at ADVault Inc.

Advance directive documents outline decisions a patient and her loved ones may make at the end of her life. These documents include living wills, healthcare power of attorney forms, and pre-hospital medical care directives, often referred to as Do Not Resuscitate orders (DNRs).

Provider access to accurate, up-to-date advance directive documents is key in ensuring they meet patient’s end-of-life care wishes. However, these documents can sometimes get lost in translation due to industry silos, leaving providers without crucial information to guide clinical decision making.

That’s because these directives aren’t easily stored in the EHR, so it’s hard for providers to access them.

Moen noted that paper-based advance directive forms lead to numerous barriers, burdens, and adverse patient outcomes during care transitions, as providers may not have immediate access to patients' end-of-life wishes at the bedside.

"Urgent treatment decisions are made at times, making immediate access to advance directives and advance care plan information essential to providing personalized, high-value care in the aging population," Moen said in an interview with EHRIntelligence.

Moen has been a member of the HL7 patient empowerment workgroup since 2019 and serves as the HL7 project lead for the Advance Directive Interoperability with FHIR project (ADI with FHIR), which began in the fall of 2020.

The ADI with FHIR project focuses on creating implementation guides for data exchange of advance care plan information through standards-based application programming interfaces (APIs).

"Our project began with the creation, exchange, and verification of information authored by a patient," Moen explained. "We are moving into practitioner-authored data now to include portable medical orders for life-sustaining treatment and patient instructions such as DNR orders related to a procedure."

Moen noted that the project focused on converting existing documents stored in clinical systems into a standardized format, as well as new documents written by an individual or a provider.

"Then, we focused on sharing that information outside the originating organization, whether with family and friends or with other providers during the transition of care," Moen said. "We also paid specific attention to the verification of who created, authenticated, and signed the document."

"Data should be usable across the continuum of care and beyond the traditional healthcare system into the communities," she said. "Patients and their caregivers are not always considered part of the healthcare ecosystem, but they are critical exchange partners."

She pointed out that COVID-19 underscored the need for advance directive interoperability as members of the aging population were under forced isolation.

"During COVID, those requiring medical care found themselves during a transition of care without anyone to accompany them or to influence medical care," she said. "Never before had the availability of digital advance directive information been so essential to delivering care."

Moen said that the HL7 community completed an environmental scan to derive a comprehensive library of advance directives and personal advance care plan documents. Standardized vocabulary codes existed for some documents, while the workgroup needed to create codes to support data exchange in other instances.

"We reviewed and adjudicated all of the content and the concepts found with the forms as part of building the FHIR implementation guide, which is currently in ballot and available for implementation,"  Moen noted.

Balloting is the formal process that HL7 uses to get feedback on specifications prior to publication.

Results from an HL7 real-world testing event helped the group modify use cases, she said.

"Dozens of organizations participated in the testing event, and we made every effort to enable implementation of digital advance directive and personal advance care planning information across all jurisdictions to finally break the bonds of paper that have hindered us for about 30 years," Moen said.

In addition to her work as the HL7 ADI with FHIR project lead, Moen co-heads a separate initiative focused on writing a patient-contributed data whitepaper.

Despite white papers that frame the potential for patient-contributed data and "extensive definitional work from ONC," she said, there is not much guidance for those interested in including and incorporating patient-generated health information into clinical workflows.

Moen noted that the whitepaper will review and update current data standards surrounding patient-generated health data.

"More importantly, the white paper is going to explore how these definitions can better be expanded to reflect the initiatives that focus on consumer engagement," she explained.

Moen said that health IT systems must have a patient-directed process so that individuals can communicate information about their advance care goals to inform provider-generated care plans.

"Interoperable exchange of advance directive information enables practitioners to create person-centered treatment plans that align with the patient's values and their quality-of-life priorities," Moen said.

She emphasized that the role of international standards, like those created by HL7, will be essential as the digital health transformation progresses.

"With the growth and availability of new health data, a need has been created for clinicians and consumers to be able to share data in a lightweight, real-time way using modern internet technologies and standards," Moen said.

"HL7 and its members provide a framework and related standards for the exchange, integration, sharing, and retrieval of electronic health and administrative information," Moen said.

She noted that healthcare organizations can leverage primary HL7 data standards and other products at no cost.

"These standards define how information is packaged and communicated from one party to another in a uniform and consistent manner by specifying the language, the structure, and the data types required for seamless integration between systems," she explained.