We conducted a scoping review of the literature followed by a series of SME interviews to identify the current state of evidence to inform best practices for portal-based test result communication in the era of the Cures Act. Most of the publications addressed patient or healthcare professional attitudes, preferences, and experiences related to existing practices. However, we also identified a small body of relatively rigorous work focused on testing new approaches to delivering test results through patient portals. Findings from the literature, as well as interviews with SMEs, suggest a need for further development of practices to educate and set expectations with patients about their results both pre- and posttesting.
Accessing test results is among the most frequently used and most highly valued features of patient portals. As such, optimizing test result communication should be a priority both for EHR vendors and healthcare systems. However, current data on patient preferences generalize, at best, to the minority of the population that uses a patient portal. A limitation of the literature is that it does not represent the patient populations for whom patient portals are less accessible, including people with low health literacy and limited English proficiency.
We found very little data about the frequency or nature of adverse outcomes associated with immediate test result disclosure. Likewise, SMEs identified few known adverse events. The literature suggests that clinicians and patients have different perceptions and experiences related to the risks of test result communication. Clinicians were more likely to recommend restrictions on releasing certain types of test results, compared with patients.
Only one study used administrative and operational data sources such as patient complaints to identify adverse outcomes associated with immediate test result release. This study and other more recent investigations114 have brought to light patient-reported concerns (e.g., access problems, wrong or unexpected information in the medical record) that have been largely left out of the national conversation on negative patient experiences related to the Cures Act.
The literature makes clear that patients value communication with clinicians and do not view the portal as a substitute for those relationships. Rather, a large portion of patients prefers to discuss test results with a clinician, but they accept the portal as a firstline form of communication when this discussion is delayed.
Most patients report a preference to receive results, normal or abnormal, through the patient portal as soon as they become available. However, patient-directed delays in test result communication have been proposed as a desirable alternative to immediate release in certain situations. The limitations of most EHRs to customize these preferences (as well as preferences for proxy users) are notable barriers to true patient-centered implementation of information access.
Data on other unintended consequences (e.g., changes in clinician and staff workload) were limited, although studies suggest some increase in workload due to patient-generated messages after viewing test results. Interviews with SMEs echoed workload and workflow issues. Future studies should replicate and extend approaches to soliciting and leveraging real-world data to understand patient and clinician experiences. Optimizing systems and practices using effective implementation strategies will ultimately benefit all patients who use patient portals to access test results.
In addition to the limitations of the evidence described above, our review has several limitations, including the relatively brief period of our search (i.e., the years immediately preceding and after passage of the Cures Act) and the lack of critical appraisal of the sources of evidence. We recommend that future efforts to generate evidence focus on the following underexplored areas:
- How exceptions to information blocking are currently implemented and used in clinical practice.
- Strengths and limitations of currently implemented EHR systems for patient-facing test result communication.
- Patient-centered design for portal users with low health literacy and/or limited English proficiency.
- Workload quantity and quality attributable to immediate release of test results, especially when results are reviewed by patients before clinicians.
- Strategies to set expectations and counsel patients about test results at the time of test ordering.
- Explanations and patient education to accompany portal-based test result displays.
