Corresponding Author: Jorie M. Butler, PhD, Division of Geriatrics, Department of Internal Medicine, University of Utah, 30 N 1900 E, Room AB 193, Salt Lake City, UT 84132, USA; ude.hatu.csh@reltub.eiroj
Received 2020 Apr 27; Revised 2020 Jul 21; Accepted 2020 Sep 10.Copyright Published by Oxford University Press on behalf of the American Medical Informatics Association 2020. This work is written by a US Government employee and is in the public domain in the US.
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Healthcare systems have adopted electronic health records (EHRs) to support clinical care. Providing patient-centered care (PCC) is a goal of many healthcare systems. In this study, we sought to explore how existing EHR systems support PCC; defined as understanding the patient as a whole person, building relational connections between the clinician and patient, and supporting patients in health self-management.
We assessed availability of EHR functions consistent with providing PCC including patient goals and preferences, integrated care plans, and contextual and patient-generated data. We surveyed and then interviewed technical representatives and expert clinical users of 6 leading EHR systems. Questions focused on the availability of specific data and functions related to PCC (for technical representatives) and the clinical usefulness of PCC functions (for clinicians) in their EHR.
Technical representatives (n = 6) reported that patient communication preferences, personalized indications for medications, and end of life preferences were functions implemented across 6 systems. Clinician users (n = 10) reported moderate usefulness of PCC functions (medians of 2–4 on a 5-pointy -35t scale), suggesting the potential for improvement across systems. Interviews revealed that clinicians do not have a shared conception of PCC. In many cases, data needed to deliver PCC was available in the EHR only in unstructured form. Data systems and functionality to support PCC are under development in these EHRs.
There are current gaps in PCC functionality in EHRs and opportunities to support the practice of PCC through EHR redesign.
Keywords: patient-centered care, electronic health records, patient-generated dataPatient-centered care (PCC) is healthcare that treats the whole patient, not just the patient’s problem. This shift requires that healthcare decisions incorporate what matters to patients, including patients’ values, preferences, and goals. PCC should include developing trusting relationships, sharing decisions about treatment, and listening to information from patients about their behavior and environment. Healthcare systems nationwide are now using electronic health records (EHRs). To learn about how well the EHRs support PCC, we recruited technical representatives who worked with, and clinicians who used, 6 major EHRs. We surveyed the technical representatives about what functions are available in their specific EHR to support PCC. We surveyed clinicians about how useful the PCC functions available in their EHR are for supporting PCC. We also conducted follow-up interviews to find out more about PCC and the EHR. Technical representatives reported all 6 systems included functionality for communication and end of life preferences. Clinician users reported that the PCC functions were moderately useful. Our results showed that PCC is beginning to be supported by EHRs, and there is room for improvement in supporting PCC by working to improve EHR design.
Patient-centered care (PCC) is an ethical imperative that shifts the approach to healthcare from disease- to person-centric. The National Academy of Medicine defines PCC as “providing care that is respectful of, and responsive to, individual patient preferences, needs, and values, and ensuring the patient's values guide all clinical decisions.” 1 We propose that PCC involves (1) understanding the patient as a whole person by incorporating patient preferences and values, (2) building relational connections between the clinician and patient by developing and sustaining a trusting relationship, and (3) supporting patients in actions that promote self-management of their health by engaging with them about their environment and behavior. 2 , 3
PCC is being proposed and implemented in healthcare systems and health information technology (health IT) is critical to support these processes. 4 , 5 One PCC approach is Age-Friendly Health Systems, centered on “what matters” to the patient and including incorporating patient goals in the development of comprehensive care plans. 6 , 7 Another is the Veterans Health Administration’s Whole Health program, supported by the Office of Patient Centered-Care and Cultural Transformation. Whole health is characterized by relationship-building between Veterans and their care teams, patient self-management focused on well-being, and traditional as well as complementary and integrative health options. 8 , 9 PCC implementation is also beginning to incorporate contextual data—information about patients’ beliefs, behavior, or environment into clinical care 10 and into the electronic health record (EHR). Patient-generated data (PGD; closely related to contextual data) encompasses many types of data provided by the patient, including outcomes, activity, or behavior tracking via output from wearable devices. PGD may also include patient-reported goals, values, and preferences. 11–15 PCC approaches may require integrating contextual and PGD into clinician facing views, which could effectively summarize the patient’s environment including social history, and current health behaviors. 16–20
Despite the imperative of PCC and the emerging frameworks to support it, health IT does not fully support this focus shift. Clinicians using EHRs spend more time documenting with less time for face to face patient care, hindering communication 21 in the patient encounter. 22 Extensive coordination among the care team is required for some EHR interactions and for decisions about what information to access or input to a patient’s electronic record. This communication coordination creates barriers to processing patient information like patient portal messages. 23 , 24 Despite these challenges, PCC functions in the EHR are being recognized as crucial. Documenting PCC information and capturing patient preferences is necessary to realize the vision of personalized precision medicine, 25 , 26 and the EHR should support effective workflow to optimize PCC processes. 27 , 28 Figure 1 illustrates the links among PCC definitions, processes, and EHR functions, depicting how EHR solutions for PCC should reinforce the processes central to PCC.