Groundbreaking Guide Helps Clinical Software Developers Put Patients First
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May 2024
A movement to include patients in decisions about their care is reaching from the exam room to the desks of software developers.
Technological advancements over the past decade have transformed health care, including clinical decision support (CDS) systems. CDS systems are digital tools and interventions that support diagnosis, treatment, and care management by offering evidence-informed care recommendations to clinical teams, patients, and other stakeholders. Despite this software’s importance in delivering timely care, patients and other end-users have rarely had a voice in its design.
The Agency for Healthcare Research and Quality’s (AHRQ) Clinical Decision Support Innovation Collaborative (CDSiC)—an ongoing digital health care-focused collaboration spearheaded by NORC—saw the benefit of inviting patients and other stakeholders to the design table to help make CDS more patient-centered, user friendly, and effective. The CDSiC is part of AHRQ’s CDS program and focuses on patient-centered CDS (PC CDS).
“Historically, health systems leaders, informaticians, and electronic health record developers have led patient-centered CDS system development without necessarily considering how their product dovetails with patient life flows,” said Prashila Dullabh, the director of NORC’s Health Implementation Science Center and vice president and senior fellow in NORC’s Health Sciences department. “Failure to consider patient, clinician, and other stakeholder needs and preferences can reduce user engagement, trust in the system, and ultimately affect health outcomes.”
“Patients should have control over their health care, including a say in the systems that are essential to it.”
The study reveals promising methods for centering patients in clinical decision support systems.
To better understand the patient-centered CDS co-design landscape, the AHRQ CDSiC’s Trust and Patient-Centeredness (T&PC) Workgroup investigated promising co-design methods and practices. The CDSiC team conducted a literature review and key informant interviews.
“Although we found few patient-centered CDS co-design frameworks, our key informant interviews yielded six promising methods: empathy interviews, consultative groups, focus groups, prototypes, surveys, and usability testing,” said Rina Dhopeshwarkar, a principal research scientist in NORC’s Health Implementation Science Center.
“We developed these findings into a first-of-its-kind guide that provides CDS developers with practical co-design approaches to improving PC CDS efficacy and, ultimately, health care delivery and outcomes,” added Priyanka Desai, a senior research scientist in NORC’s Health Implementation Science Center.
A first-of-its-kind guide lets developers pick their preferred approaches.
This guide, one of three T&PC Workgroup reports, delves into each method’s features, benefits, and implementation considerations. The guide also lets developers pick their preferred approaches and potentially combine them at different stages. In addition, this new resource also provides the following suggestions for improving co-design collaboration:
- Communicate clearly about expectations, roles, and responsibilities
- Demonstrate empathy and inclusivity
- Develop methods for bilateral communication
- Invite and integrate different types of end-user contributions
- Negotiate and resolve conflicts proactively and collaboratively to build trust and confidence
- Establish an infrastructure for end users to easily and equitably access co-design platforms and resources
- Provide compensation to collaborators
“This resource is one of more than a dozen NORC-led products developed for AHRQ since 2021. It will be particularly helpful to designers and developers of patient-centric CDS tools,” Dullabh said. “After all, patients should have control over their health care, including a say in the systems that are essential to it.”
See how our cross-discipline team can help you turn health care discoveries and insights into better practices for patients.
This article is from our flagship newsletter, NORC Now. NORC Now keeps you informed of the full breadth of NORC’s work, the questions we help our clients answer, and the issues we help them address.
