Implications of Patient Portal Transparency in Oncology: Qualitative Interview Study on the Experiences of Patients, Oncologists, and Medical Informaticists

Abstract

BackgroundProviding patients with unrestricted access to their electronic medical records through patient portals has impacted patient-provider communication and patients’ personal health knowledge. However, little is known about how patient portals are used in oncology.ObjectiveThe aim of this study was to understand attitudes of the portal’s adoption for oncology and to identify the advantages and disadvantages of using the portal to communicate and view medical information.MethodsIn-depth semistructured interviews were conducted with 60 participants: 35 patients, 13 oncologists, and 12 medical informaticists. Interviews were recorded, transcribed, and thematically analyzed to identify critical incidents and general attitudes encountered by participants.ResultsTwo primary themes were discovered: (1) implementation practices influence attitudes, in which the decision-making and execution process of introducing portals throughout the hospital did not include the input of oncologists. Lack of oncologists’ involvement led to a lack of knowledge about portal functionality, such as not knowing the time period when test results would be disclosed to patients; (2) perceptions of portals as communication tools varies by user type, meaning that each participant group (patients, oncologists, and medical informaticists) had varied opinions about how the portal should be used to transmit and receive information. Oncologists and medical informaticists had difficulty understanding one another’s culture and communication processes in their fields, while patients had preferences for how they would like to receive communication, but it largely depended upon the type of test being disclosed.ConclusionsThe majority of patients (54%, 19/35) who participated in this study viewed lab results or scan reports via the portal before being contacted by a clinician. Most were relatively comfortable with this manner of disclosure but still preferred face-to-face or telephone communication. Findings from this study indicate that portal education is needed for both patients and oncologists, especially when portals are implemented across entire health systems since highly specialized areas of medicine may have unique needs and uses. Patient portals in oncology can potentially alter the way diagnoses are delivered and how patients and oncologists communicate. Therefore, communication about the portal should be established during initial consultations so patients can decide whether they want to be informed in such a manner.

Information Access and Use by Patients With Cancer and Their Friends and Family: Development of a Grounded Theory

“…In contrast, when there is little standardization, specific management details, such as which clinicians will be involved, the treatments that will likely be offered, or the timing of these treatments, may quickly become inaccurate or unreliable, resulting in confusion and distress for individuals using those details to plan their lives. In addition to standardization, internet-based patient portals, which connect patients with cancer to their health care data such as consultation reports, imaging, laboratory values, and informational support, are being established at an increasing number of cancer centers [ 66 , 72 - 74 ]. This also supports that clinical integration of online informational resources delivering high-quality CRD is possible.…”

Empowering Patients during Hospitalization: Perspectives on Inpatient Portal Use

“…Prior research has highlighted the misalignment between stakeholders as being a critical barrier for the cultural incorporation of inpatient portals, thus a shift in culture could facilitate the adoption, implementation, and use of portals to better empower and engage patients and their families in the care process. 31,38 This study may be limited in some notable aspects. First, we examined patient and provider perceptions related to portal use in a single health care system.…”

Full Radiology Report through Patient Web Portal: A Literature Review

“…The information currently provided is not easily understood by patients, which is an issue for many radiologists and referencing physicians (RPs). These medical professionals are concerned that patients who can access these reports may experience greater anxiety and engage in a time-consuming follow-up process with their RPs to answer their questions and obtain a greater understanding of the report content [13,[28][29][30]38,41,44,52]. To evaluate these issues, many points must be taken into account.…”