Patient Use of Pathology Reports via Online Portals: What Have We Learned and Where Are We Going? Open Access

Patients now have access to online portals that allow them to connect with clinical providers and access elements of their medical record, including provider notes and test results. Benefits of online portals include improving patient engagement, informedness, and ownership of their role in medical decision making, in turn improving patient-clinician relationships, patient safety, and outcomes.^1–4  For some patients, the transparency provided by patient portals provides the additional benefits of more efficient care, including time savings and a decreased need for in-person appointments.⁵ 

Despite the benefits of transparency, most pathology reports are designed to communicate to clinical providers, not patients, raising concerns that they may elicit confusion and/or anxiety, particularly when they convey “abnormal” results. Concerns regarding pathology report release have amplified with the finalization of the 21st Century Cures Act, which requires that patients now be provided access to their electronic medical record free of charge and without delay.^6,7 

We agree with the recent CAP Today⁸  cover article statement that “Neither pathologists nor laboratories should panic over the new 21^st Century Cures Act rules making laboratory results immediately accessible to patients,” particularly when clinicians appropriately prepare patients for the potential implications of positive or negative results. However, more data are needed to better understand how patients use pathology reports via patient portals and to investigate barriers to access.

Following institutional review board approval, we conducted a study in which 1-page paper surveys were administered to breast clinic patients during a 1-year period (February 2019–February 2020). Surveys were only available in English, but translator services were available in all languages. Any patient who had a pathology report after March 2018, when online review became available via Epic MyChart (Verona, Wisconsin), was eligible. The survey was anonymous and voluntary, and patients were asked to complete it only once. An administrative section collected optional clinical data.

A total of 149 surveys were received. Of note, the study closed early because of the coronavirus 2019 (COVID-19) pandemic, and only 56 (37.6%) respondents had clinical data. Of 56 respondents with clinical data, mean age was 56 years (range, 20–81 years), with most (45 of 54; 83.3%) being seen in follow-up rather than at initial appointment (9 of 54; 16.7%). Most (36 of 55; 65.5%) were seen for cancer (ductal carcinoma in situ or invasive carcinoma) rather than a benign diagnosis (19 of 55; 34.5%). Distress tool score (DTS) was provided for 22 patients, with DTS ≥4, a level that raises concern for psychosocial well-being, seen in 3 patients (3 of 22; 13.6%), 2 with benign breast disease and 1 with cancer.

Most respondents (123 of 149; 82.5%) indicated that they had or planned to review their pathology reports in MyChart. Answering yes to this question was significantly associated with younger patient age (mean, 54.5 versus 61.8 years; P = .03). Most patients (124 of 149; 83.2%) indicated that they “believe that their pathology report allows them to better understand their diagnosis.”

Additional comments were provided in 38 of 149 surveys (25.5%): 13 (34.2%) affirmed online access to be a positive experience; 2 (5.3%) stated lack of knowledge of the portal but expressed interest in it; 6 (15.8%) related to problems with access for various reasons, such as not being able to combine maiden/married name, lack of availability in their native language, or lack of computer/assistance; 5 (13.15%) provided additional information about respondent preferences (eg, “depends on the procedure”); 5 (13.15%) stated that they preferred discussion with the clinical team compared with accessing reports online, whereas 1 patient deferred online review to a family member; 3 (7.9%) stated that they had already received a paper copy; 1 (2.6%) expressed distrust in the online portal related to computer hacking potential; and 3 (7.9%) addressed difficulty in understanding the report (eg, “The way a pathology report is worded is hard to understand.”).

Please see the Supplemental Digital Content for additional survey responses.

There are multiple limitations for our study, including bias related to the study group (eg, breast patients, voluntary participation), small sample size, and low inclusion of demographic data. However, despite these limitations, our findings are consistent with recent, related literature in that most patients find access to test results via patient portals to be beneficial, helping them have a greater understanding of their medical condition and better preparing them to participate in health care decisions in partnership with the clinical team.

In a Kaiser Permanente member survey with 1546 respondents, 72% reported high levels of satisfaction when viewing test results online.⁹  Regrading preferences regarding timing of access, Alpert et al¹  saw that most (19 of 35; 54%) oncology patient survey respondents viewed laboratory results in an online portal prior to being contacted by their provider. In the survey study by Giardina et al,¹⁰  respondents favored access to all test results, including abnormal ones.¹¹ 

Many patients desire access to reports via the online portal as a means for empowerment, allowing them to feel more actively involved in their health care decisions. However, there are subsets of patients who are unable to or feel uncomfortable accessing pathology results via an online portal. We attempted to use DTS as an objective measure of stress among patients in our study. However, limited DTS data precluded meaningful conclusions related to portal use. Additional studies using DTS and/or other objective criteria would be beneficial in exploring reasons for hesitancy in portal use among some patients. As in our study, patient online portal use has been previously associated with younger age.^12,13  Additional features previously associated with portal use include higher education levels, greater technology experience, high-speed Internet availability, and private insurance.^13–16  These studies highlight disparities among resource-limited populations and bring to light the need for the study of interventions that aim to improve equity.¹⁷ 

Despite clinician concerns, early studies have shown that real-time release of pathology reports may be more concerning to clinicians than patients.^18,19  In their study examining the potential negative impacts of real-time medical record release, van Kuppenveld et al¹⁹  observed a Dutch cohort during a 2-year period; 190 000 patients accessed results, and during this time there were just 6 incidents related to the portal, with 2 related to the real-time disclosure of information. In some studies, patient anxiety and confusion were lower among patients who accessed test results via a portal who felt that they had been prepared for the results by clinicians.^9,10 

In the era of real-time result release, many clinicians have adapted practices to both better prepare patients as well as expedite follow-up and communication with patients regarding test results. Pathologists must also be cognizant of how the information and timing of release of a pathology report may impact the patient and clinician. Beyond the everyday efforts of reaching out to clinicians with unexpected or delayed results, this has led to innovative efforts by pathologists. These include the redesign of reports with clear and succinct language and a patient-centered approach,^20,21  as well as the creation of patient-friendly resources to enhance understanding of pathology reports.^22,23  An example is MyPathologyReport.ca,²⁴  which is online and conveniently linked to the patient portal.²³  This extends to some patients wanting to learn more about their disease from pathologists. Positive experiences have been highlighted in pilot studies of consultation services in which patients can discuss pathology results and/or view slides with a pathologist.^25,26  A recent survey study by Lapedis et al²⁷  using Twitter found variable but overall high interest in this type of direct patient interaction among pathologists.²⁷  However, implementing such practices will require a clearer road map, including both strategies backed by successful pilot studies and detailed policies for how these practices could be supported within health care systems.

Patient use of online portals to view pathology reports will likely continue to rise as most patients find access beneficial and as the adoption of real-time release becomes more universal. As experience with online patient portals increases, best practices will continue to evolve, but they may include clinician and pathology practice changes as well as the use of patient-centered resources and pathology clinics. More studies examining populations averse or hesitant to use online portals, as well as those exploring interventions to expand online portal access among vulnerable, resourcelimited populations, are needed.