Stakeholders Convene to Facilitate Electronic Advanced Care Planning

By Ed Daniels, Senior Consultant

By Pooja Babbrah, PBM Practice Lead

Stakeholders are joining together to address how health information technology (health IT) can be leveraged to document, access and share information on patients’ care and end-of-life preferences. While advanced care planning (ACP) may be an uncomfortable topic for many people, the global pandemic has made the need to share your care preferences and end-of-life wishes increasingly apparent. Making your preferences and directives known to others is important especially when patients are unexpectedly unable to speak for themselves or make their own health care decisions. Having a digitally accessible ACP makes a significant difference in how wishes and preferences are made known to and honored by families and care team members. That is especially true when it comes to use of heroic, life-sustaining measures when there is little or no likelihood of recovery.

To be sure, some forms of ACP, such as advance directives and do-not-resuscitate orders, have been around for years. Yet these documents have historically been paper-based, often making them inaccessible to family members, caregivers and providers in times of patient crisis. Moreover, such documents are often standalone and not part of a comprehensive digitized ACP record. In fact, only 30% of Americans have advance directives documents. When they do exist, they are frequently difficult to access and share among family and the care team. Even if some ACP information is available electronically, it may not be accurate or useful because health care status and preferences for care change frequently, especially during a health crisis. Patients need easy ways to update ACPs and make them available across the globe wherever and whenever a patient requires medical care.

With those needs in mind, Point-of-Care Partners (POCP), the Interoperability Institute, BPM+ Health and the Object Management Group (OMG) are convening stakeholders to focus on how health IT can address electronic informed consent and ACP. The goal is to create a collaborative that will address ACP’s many technical aspects, including data standards, sharable clinical pathways and the role of electronic health records (EHRs). The collaborative will also delve into such other facets of ACP as ethics and patient outreach.

An initial planning meeting for the collaborative was held April 7 and focused on the nuts and bolts of getting the group off the ground. Participants included payers, providers, case managers, health IT vendors, standards organizations and advocacy groups.

The backstory. Why is ACP becoming an issue at this time? Three drivers for change are making ACPs a front-and-center issue.

1. The rise of chronic illness and the aging of the population. While use of ACPs is not limited to the elderly and chronically ill, those populations account for the vast majority of people who need one. According to the Centers for Disease Control and Prevention, four in 10 Americans have two or more chronic illnesses and nearly three-quarters of Americans die from one of the top 10. The Census Bureau reports the elderly population grew by over a third during the past decade, now totaling more than 54 million.
2. The move toward value-based care (VBC). VBC rewards reduced costs and improved quality. Electronic ACP relates to both. Payers could see significant cost savings when providers clearly understand patients’ preferences for end-of-life care. For example, implementation of ACP programs can result in fewer hospitalizations, reduced intensive care unit admissions and shorter lengths of stay as well as lower overall costs driven by a reduction in inpatient utilization.
3. COVID-19. The pandemic brought into sharp focus the need for ACP when tens of thousands of patients were hospitalized—many of whom were outside their normal care networks and could not speak for themselves. Furthermore, due to pandemic safety measures, these patients had no family or loved ones around them to speak on their behalf.

In addition, ACP is a subset of a bigger movement toward electronic informed consent (eConsent) management, which is rapidly gaining momentum in 2021. Other types of eConsent include consent to provide access to specific types of protected health information. eConsent can be used to authorize a provider to perform a specific clinical procedure as well as agree to participation in a clinical trial. All of these uses of eConsent face similar challenges requiring uniform data standards, legal mechanisms allowing use across state lines, and shared processes that can be used by mobile application vendors, EHRs and other health care software applications used by providers and consumers.

Fortunately, the new eConsent coalition will have a foundation to build on. The successes of HL7, OMG and other collaborative organizations can be brought to bear.

• Leveraging FHIR accelerators. HL7’s FHIR (Fast Healthcare Interoperability Resources) accelerators present many opportunities to learn from successful multistakeholder collaborations. FHIR accelerators bring together stakeholders across health care to identify and address specific use cases and practical implementations of the FHIR standard. An example is the Da Vinci Project (for which POCP is program manager). Da Vinci is a private-sector initiative aimed at helping payers and providers positively impact clinical, quality, cost and care management outcomes by leveraging the HL7 FHIR platform.
• ApplyingBusiness Process Modeling (BPM) standards to clinical care pathways and workflows. The participation of the BPM+ Health community will help the eConsent collaborative use BPM standards to author, share and implement evidence-based clinical care guidelines and clinical pathways related to eConsent and ACP. Use of Business Process Modeling Notation™ (BPMN), Case Management Model and Notation™ (CMMN) and Decision Model and Notation™ (DMN) standards will help collaborative workgroups graphically design ACP workflows and then share and implement them across clinical institutions and software vendors and developers.
• Building on eConsent efforts. The move toward electronic ACPs also can leverage ongoing work in digitization of patient consent and consent management, which will continue to be areas of emphasis across the health care spectrum. Stakeholder organizations that need to manage consent effectively include health systems, researchers, providers, EHR vendors, health information exchanges (HIEs), health information networks, labs, pharmacies and payers/health plans. Organizations do not necessarily need direct patient interaction to be concerned with consent, as is the case with many HIEs that are not patient facing. Patient consent will need to be managed across stakeholders and technology platforms, and the eConsent collaborative intends to develop sharable workflows and best practices to assist with this process.
• Developing new standards. HL7’s Post-Acute Care Interoperability (PACIO) community is currently developing standards and a template for advance directives. This includes improving data interoperability by documenting availability of ACP information in the EHR using the United States Core Data for Interoperability (USCDI v1).
• Addressing sociodemographic and cultural For a variety of reasons, ACP documents may not be trusted by family, providers and attorneys. Social and cultural barriers need to be identified and addressed. We all know it is difficult to get people to think about their own death, much less plan for it. Other challenges confront populations differently. The move to eConsent will make care planning more difficult for those who lack broadband and computer access. This constraint will have an uneven impact on rural and low-income patients.

All in all, electronic ACP is an area that affects many stakeholders. Want to join the coalition or learn more about electronic ACP? Reach out to us at poojah.babbrah@pocp.com or ed.daniels@pocp.com,and review the eConsent collaborative website at https://interoperabilityinstitute.org/econsent-collaborative/.

In this issue:

1. Moving Forward With the FHIR at Scale Taskforce
2. 10 Ways to Move the Needle on Adoption of Electronic Prior Authorization
3. Stakeholders Convene to Facilitate Electronic Advanced Care Planning