Major challenges and opportunities for patient CDS | Biden News


Dr. Prashila Dullabh is vice president and senior fellow at NORC at the University of Chicago, and Director of NORC’s Health Implementation Science Center. She serves as the Principal Investigator of the Clinical Decision Support Innovation Collaborative Project.

She co-authored this paper with Dean Sittig, NORC senior fellow and professor of biomedical informatics at the University of Texas Health Science Center and co-investigator of the CDSiC Project; Dr. David Lobach, vice president of health informatics research at Elimu Informatics and co-investigator of the CDSiC Project; James Swiger, health science manager in the division of digital health research in the Center for Evidence and Practice Improvement at the Agency for Healthcare Research and Quality; and Dr. Edwin Lomotan, chief of clinical informatics for the Division of Digital Healthcare Research in the Center for Evidence and Practice Improvement at AHRQ.

Providing patient-centered, equitable, and evidence-based health care is increasingly recognized as a goal that the American health care system needs to aspire to and work towards. Thanks in part to the efforts of the Department of Health and Human Services, Agency for Healthcare Research and Quality, the US healthcare system is transitioning to being able to provide patients, caregivers and their care teams access to evidence-based recommendations to guide clinical decision-making. which includes patient needs and preferences.

Since 2016, AHRQ has funded a series of projects focused on defining, refining, and improving the use of patient-centered outcomes research through technology-enabled clinical decision support tools.

In this Viewpoint we encapsulate the challenges and opportunities facing patient-centered CDS, or PC CDS, highlighting key findings from the Journal of the American Medical Informatics Association: Challenges and Opportunities for Advancing Patient-Centered Clinical Decision Support: Findings from Horizonta Scanning. . [1]

What is patient-centered clinical decision support?

Traditional CDS encompasses digital tools that provide timely information, usually at the point of care, to help clinicians make informed decisions about a patient’s care. While traditional CDS is clinician-facing, PC CDS is patient-facing and the two can be complementary. PC CDS offers new ways to integrate patient, caregiver and family perspectives into evidence-based care facilitated by digital tools.

PC CDS incorporates patient-supplied information—such as data from medical devices, wearables, and patient-reported outcome surveys, as well as social determinants of health and patient preference data—directly in the office, home, or other community-based setting. PC CDS also supports patients and providers to engage in a shared decision-making process that considers patient needs and preferences.

The recent COVID-19 pandemic has provided a natural testing ground for identifying new ways that patient- and caregiver-oriented digital tools and technologies can support patient-centered care.

COVID-19 remote monitoring applications that collect and use patient-reported data (eg, oxygen saturation, respiratory rate, temperature) to help physicians manage patient care recommendations are examples of new PCS tools. To ensure that we have a supportive digital ecosystem to fully realize the benefits of PC CDS, however, we must face a number of key challenges.

Key challenges facing PC CDS moving forward

1. Establish trust and transparency in PC-KDS. Putting patients at the center of PC CDS will increase the usefulness of PC CDS tools for both patients and providers. This requires establishing trust. Before they consistently participate in the full operation of PC CDS tools, patients and providers must trust the underlying research and the prioritization of evidence included in PC CDS tools.

Providers can further benefit from understanding how the evidence used in PC CDS can inform their discussions with patients. Ensuring that health programs and other computer-based CDS tools meet certain safety and quality criteria will also increase patient and provider confidence in the reliability and validity of these tools, especially when the programs involve decision support.

Finally, patients and providers need assurances that PC-CDS tools are regularly updated as evidence changes. Bringing greater transparency to how PC CDS is developed from clinical guidelines can only increase PC CDS adoption and use.

2. Including patient input in all phases of PC CDS development. Understanding the patient’s needs, wishes, expectations and strengths is, by definition, central to the development of PC CDS. But achieving this understanding requires patient engagement that is meaningful and sustainable. We must prioritize patient involvement and meaningful patient input throughout the PC development life cycle – incorporating patient preferences intentionally and in multiple ways.

Patient involvement early, at the research stage, ensures that evidence-based guidelines derived from the research are truly patient-centered and that these guidelines are understood and prioritized in a way that maximizes patient participation in PC CDS. Currently, PC CDS design does not account for the different decision-making processes of patients and providers.

A better understanding of the literature on individual and shared decision-making processes will enable PC CDS developers to target interventions to foster SDM and accurately reflect patients’ goals and preferences. Industry-wide principles and guidelines for safe and effective ways to deliver patient-facing PCS that fit with patients’ life flow are also needed. We must engage in co-design activities with patients to develop designs that provide the right information at the right time in the right format to ensure patient engagement.

3. Developing technical standards for PC CDS tools. A variety of technical standards are needed to advance PC-CD, encompassing semantic (ie, data content) and syntactic (ie, exchange standards) interoperability requirements. Currently, technical limitations of PC CDS include a lack of standards for knowledge representation and sharing, standards for device/portable data exchange, and standards for capturing patient preferences.

In addition, “true” integration of patient-generated health data into electronic health records limits PC CDS tools from being as patient-centered as possible. A critical component of PC CDS is ensuring that guidance is triggered at the appropriate times in the clinician and patient workflows. While specialized, standards-based application programming interfaces such as CDS Hooks exist, EHR software support and implementation of these standards remains highly variable. We have seen advances in technical standards, but considerable work remains.

4. Improve measures and methods for monitoring PC CDS tools. To ensure that PC CDS interventions measurably improve physician and patient decision-making and health outcomes, we must accurately measure and monitor the performance of the various forms of PC CDS. Measurement efforts to date have focused largely on assessing PC CDS feasibility and acceptability.

Progress has been made in measuring the “success” of PC CDS in studies that measure knowledge acquisition, patient activation, patient satisfaction, and quality of life. But there is a lack of evidence on what forms of PC CDS work best for different clinical conditions and patient preferences. Relatedly, to inform substantive and targeted assessments of PC CDS, we need more comprehensive outcome measures that are relevant to patients.

Addressing the challenges

In September 2021, AHRQ funded the Clinical Decision Support Innovation Collaborative (CDSiC). The CDSiC aims to promote the design, development, dissemination, implementation, use, measurement and evaluation of PC CDS. The CDSiC will support four working groups focused on scaling and measurement, outcomes, trust and resilience and standards and regulatory frameworks.

The working groups will develop tools and products that help address some of the outstanding PC CDS challenges through guidance and recommendations related to:

  • Increasing source credibility of PC CDS
  • Incorporating patient-centered inputs into PC CDS and involving patients in PC CDS co-design
  • Addressing gaps in existing PC CDS standards and regulatory frameworks
  • Identify outcome measures and approaches to measure the effects of PC CDS

The CDSiC Innovation Center will also conduct real-world implementation and research projects to advance standards-based PC CDS. To accomplish its goals, the CDSiC will draw on the expertise of a wide range of stakeholders—including patients, clinicians, researchers, health information technology (health IT) and CDS developers, informants, payers, and policy makers. The CDSiC provides the field with a unique opportunity to address the cross-cutting PC CDS technical challenges.

[1] The JAMIA article is based on an AHRQ-funded horizon scan to explore the current state of PC CDS and to identify future directions for research and development. The scan included a comprehensive literature review, input from a 22-member expert panel and 18 key informant discussions.


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