Advancing Patient-Centered Clinical Decision Support

AHRQ is a leader in patient-centered clinical decision support research

Traditionally, clinical decision support (CDS) has focused on assisting clinicians at the point of care by delivering diagnostic and treatment guidance based on clinical guidelines. However, CDS tools lacked interoperability and shareability between electronic health record (EHR) systems. Furthermore, they did not take patient-centered (PC) care into account—including the patient’s multiple personal needs to support their health and well-being.

AHRQ recognized the need and value of including the patient’s voice and input into CDS, as well as the importance to include this input in all phases of the CDS lifecycle, including design, implementation, and evaluation. In 2016, AHRQ set out to make CDS more shareable and interoperable by launching an ambitious multicomponent initiative focused on advancing evidence into practice through CDS tools that put the patient at the center of the work.

Recommendations to further AHRQ investment in PC CDS

With support from the Patient Centered Outcomes Research (PCOR) Trust Fund, AHRQ awarded a contract to NORC at the University of Chicago (NORC) to research future directions and opportunities AHRQ could explore to advance PC CDS.

Following a horizon scan based on the current state of literature for PC CDS and what areas could be targeted to explore further, AHRQ and NORC published the seminal definition of PC CDS: “Tools that significantly incorporate patient-centered factors related to knowledge, data, delivery, and use.” This shift toward PC care has increased interest in and a need for evidence-based CDS that directly engages patients and incorporates patient-specific data.

“There needed to be a focused effort to define what we now call PC CDS. And we, along with AHRQ, were able to formalize a definition of PC CDS into something that the field can refer to. This work was foundational, and AHRQ will be able to build on it.” – Dr. Prashila Dullabh

As part of this work, NORC and the research team also identified 12 challenges in developing successful PC CDS. The most notable challenge was the lack of patient input. Patients’ input is critical to prioritizing topics for PC CDS because it ensures that it aligns with patients’ routine behaviors. Other challenges included keeping PC CDS up to date, lack of PC terminology standards, lack of PC CDS integration into clinical workflows, lack of patient and provider trust, and poor design that can result in lack of sustained patient or provider engagement.

The team understood that the challenges also presented opportunities for advancing PC CDS, including the development of industry-wide practices and standards to increase transparency, standardize terminologies, and incorporate patient input. There is also opportunity to engage patients throughout the PC research and design process to ensure that outcome measures are relevant to their needs.

“In order to get patient-centered CDS right, we need a much broader stakeholder engagement effort. It was clear that we needed to have much more active participation from patients, from electronic health record vendors, and even health systems and payers. They all need to be at the table.” – Dr. Prashila Dullabh

Testing patient-centered CDS in the real world

The research team implemented two unique pilots that tested PC CDS in real-world settings to gain a better understanding of how it could be implemented more broadly. For the first pilot, the team used Fast Healthcare Interoperability Resources (FHIR) standards to integrate a patient app for tracking and monitoring COVID-19 symptoms with an EHR. However, even with FHIR standards-based approaches to support “plug and play” integration, the team encountered integration challenges. The second pilot examined a patient app for postpartum monitoring of hypertensive disorders that integrated patient-contributed data into EHRs to support monitoring and clinical decision making. This pilot used the same PC design elements as the COVID-19 pilot.

From these pilots, researchers learned that future PC CDS efforts should focus on expanding standards development to address gaps; pilot new standards where there are deficiencies; and accelerate standards adoption by EHR developers. These efforts should also promote research into scalability through cooperation with standards development organizations, EHR developers, and other healthcare stakeholders.

What’s next for PC CDS at AHRQ

A direct influence of this work was the creation of the CDS Innovation Collaborative (CDSiC). Because PC CDS development needs more stakeholder involvement—including patients and vendors—the CDSiC serves as a learning collaborative to advance the concept of PC CDS. It is creating a rich foundation of PC CDS resources and bringing together patients, developers, clinicians, and others through workgroups, demonstration projects, and annual meetings. Now in its third year, the CDSiC has created numerous resources to further the field of PC CDS, anchoring AHRQ as a leader in this space.