Abstract
BackgroundPatient-accessible electronic health records give patients quick and easy access to their health care data, enabling them to view their test results online prior to a clinic visit. Hospital reports can be difficult for patients to understand, however, and can lead to unnecessary anxiety.ObjectiveWe aimed to investigate the attitudes and experiences of Danish patients with metastatic breast cancer in using electronic health records to view their own scan results.MethodsWe conducted a prospective mixed methods study in a sequential design at our institution during 2018. Participants were women with metastatic breast cancer who were having scans every 3 months (combined positron emission tomography and computed tomography or computed tomography alone) to monitor treatment effects. Participants first received an online questionnaire about their knowledge and use of online access to scan results. We then conducted semistructured interviews with 4 women who used the online access to view their scan results.ResultsA total of 46 patients received the questionnaire (median age 66, SD 11.8, range 34-84 years). Of these women, 38 (83%) completed the survey (median age 69, SD 10.7, range 42-84 years). Most patients (34/38) were aware of the opportunity to access their reports online, but only 40% (15/38) used this access to read their scan results. Barriers to online access were (1) anxiety over reading the scan results in the absence of clinician support, and (2) a preference to receive all disease information at their next hospital appointment. The patients who read their scan result found that facilitators were greater transparency and empowerment, and barriers were the consequences of reading bad news, the feeling of dilemma about the access, and the medical terminology.ConclusionsPatients with metastatic breast cancer generally had a positive attitude toward electronic access to their scan results, and those who used this opportunity played a greater participatory role in their disease and its management. Others described the potential distress this opportunity caused. The study findings suggest that immediate online access to scan results should be available to patients, but it needs a support function alongside that ensures optimal patient care.
Highlights
Patient-Accessible Electronic Health RecordsHealth care has become more patient centered over the last decade and, together with the digitization era, this has resulted in implementation of patient-accessible electronic health records (PAEHRs) [1,2]
The patients who read their scan result found that facilitators were greater transparency and empowerment, and barriers were the consequences of reading bad news, the feeling of dilemma about the access, and the medical terminology
Patients with metastatic breast cancer generally had a positive attitude toward electronic access to their scan results, and those who used this opportunity played a greater participatory role in their disease and its management
Summary
Patient-Accessible Electronic Health RecordsHealth care has become more patient centered over the last decade and, together with the digitization era, this has resulted in implementation of patient-accessible electronic health records (PAEHRs) [1,2]. Giving patients full access to their own health data increases transparency and gives the patient greater insight into individual health conditions and treatment plans. This can facilitate the communication between patient and health care professionals and thereby encourage more active patient participation in own health care [5]. When patients access test results on their own, the detailed information from a health care professional is lacking, and the report may be difficult for the patient to understand [8,9] This may cause the patient to misinterpret the results, leading to unnecessary distress or anxiety [3,10]. Hospital reports can be difficult for patients to understand, and can lead to unnecessary anxiety
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