The anxious wait: assessing the impact of patient accessible EHRs for breast cancer patients

Abstract

BackgroundPersonal health records (PHRs) provide patients with access to personal health information (PHI) and targeted education. The use of PHRs has the potential to improve a wide range of outcomes, including empowering patients to be more active participants in their care. There are a number of widespread barriers to adoption, including privacy and security considerations. In addition, there are clinical concerns that patients could become anxious or distressed when accessing complex medical information. This study assesses the implementation of a PHR, and its impact on anxiety levels and perceptions of self-efficacy in a sample of breast cancer patients.MethodsA quasi-experimental pre-test/post-test design was used to collect data from participants to evaluate the use of the PHR. Study participants completed background and pre-assessment questionnaires and were then registered into the portal. By entering an activation key, participants were then able to review their lab results and diagnostic imaging reports. After six weeks, participants completed post-assessment questionnaires and usability heuristics. All data were collected using an online survey tool. Data were cleaned and analyzed using SAS v9.1.ResultsA total of 311 breast cancer patients completed demographic and pre-assessment questionnaires, 250 registered to use the online intervention, and 125 participants completed all required study elements. Matching the pre- and post-anxiety scores demonstrated a decrease in mean anxiety scores (-2.2, p = 0.03); the chemotherapy sub-group had a statistically insignificant mean increase (1.8, p = .14). There was no mean change in self-efficacy scores.ConclusionsParticipants generally found the portal easy to use; however, the perceived value of improved participation was not detected in the self-efficacy scores. Having access to personal health information did not increase anxiety levels. While these results suggest that the use of this PHR may be of benefit for informing patients, further research is required to investigate the impact on the patients experiences, their participation in their care, their relationships with the health care team, and their health outcomes.

Patient Accessible Electronic Health Records for the Chronically Ill: A Review of the Literature

“…Six studies were designed as randomized trials [14][15][16][17][18][19], 12 utilized quasi-experimental methods [20][21][22][23][24][25][26][27][28][29][30][31] , two papers presented case studies [32,33] and the remaining paper employed observational methodologies [34] . The majority of research was conducted in the United States [15, 17-19, 21-23, 27, 30-35] ; other papers were from the United Kingdom [14,33] , The Netherlands [20] , Italy [26] , Peru [24] , Norway [25] , South Korea [16] and Canada [28,29] . Most of the sample populations were drawn from outpatient settings linked to a hospital or medical centre.…”

Predictors and Intensity of Online Access to Electronic Medical Records Among Patients With Cancer

“…A survey of patients with breast cancer with access to electronic health records reported a reduction in stress attributed to decreased wait time for results. 16 Conversely, other series have described anxiety experienced by patients when viewing results electronically. 17 Another critical issue going forward is the use of patient health portals as a means to contact the health care team.…”

Increase in Cancer Center Staff Effort Related to Electronic Patient Portal Use

“…Accordingly, it is possible that our study cohort may Conversely, they have also expressed concern regarding lowered threshold at which patients initiate communication with providers, usability of electronic platforms, cost of implementation, and workload implications. [15][16][17]27,28 Future mixed-method studies are needed to explore implications for nurse and other staff time and effort and impact on in-person patient care activities and clinic work flow. Staff use of patient portals outside clinic hours raises potential concerns about staff workload,professional satisfaction, and patient safety.…”

“…Medical record access has been examined with regard to effects on anxiety and disease-specific education. 27,33 However, there are few available data on workflow effects. It is possible that first-hand and immediate access to laboratory data and radiology results could lead to an increase in electronic messaging, telephone encounters, and clinic visits to address questions or anxiety arising from the information.…”