Dataset Information

Designing a patient-centered user interface for access decisions about EHR data: implications from patient interviews.

ABSTRACT:

Background

Electronic health records change the landscape of patient data sharing and privacy by increasing the amount of information collected and stored and the number of potential recipients. Patients desire granular control over who receives what information in their electronic health record (EHR), but there are no current patient interfaces that allow them to record their preferences for EHR access.

Objective

Our aim was to derive the user needs of patients regarding the design of a user interface that records patients' individual choices about who can access data in their EHRs.

Design

We used semi-structured interviews.

Setting

The study was conducted in Central Indiana.

Participants

Thirty patients with data stored in an EHR, the majority of whom (70 %) had highly sensitive health EHR data, were included in the study.

Approach

We conducted a thematic and quantitative analysis of transcribed interview data.

Key results

Patients rarely knew what data were in their EHRs, but would have liked to know. They also wanted to be able to control who could access what information in their EHR and wanted to be notified when their data we re accessed.

Conclusions

We derived six implications for the design of a patient-centered tool to allow individual choice in the disclosure of EHR: easy patient access to their EHRs; an overview of current EHR sharing permissions; granular, hierarchical control over EHR access; EHR access controls based on dates; contextual privacy controls; and notification when their EHRs are accessed.

SUBMITTER: Caine K

PROVIDER: S-EPMC4265225 | biostudies-literature | 2015 Jan

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Designing a patient-centered user interface for access decisions about EHR data: implications from patient interviews.

Caine Kelly K Kohn Spencer S Lawrence Carrie C Hanania Rima R Meslin Eric M EM Tierney William M WM

Journal of general internal medicine 20150101

<h4>Background</h4>Electronic health records change the landscape of patient data sharing and privacy by increasing the amount of information collected and stored and the number of potential recipients. Patients desire granular control over who receives what information in their electronic health record (EHR), but there are no current patient interfaces that allow them to record their preferences for EHR access.<h4>Objective</h4>Our aim was to derive the user needs of patients regarding the desi ...[more]

PMID: 25480719

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Project description:BACKGROUND:In recent literature, patient portals are considered as important tools for the delivery of patient-centered care. To date, it is not clear how patients would conceptualize a patient portal and which health information needs they have when doing so. OBJECTIVE:This study aimed (1) to investigate health information needs, expectations, and attitudes toward a patient portal and (2) to assess whether determinants, such as patient characteristics, health literacy, and empowerment status, can predict two different variables, namely the importance people attribute to obtaining health information when using a patient portal and the expectations concerning personal health care when using a patient portal. METHODS:We conducted a cross-sectional survey of the Flemish population on what patients prefer to know about their digital health data and their expectations and attitudes toward using a patient portal to access their electronic health record. People were invited to participate in the survey through newsletters, social media, and magazines. We used a questionnaire including demographics, health characteristics, health literacy, patient empowerment, and patient portal characteristics. RESULTS:We received 433 completed surveys. The health information needs included features such as being notified when one's health changes (371/396, 93.7%), being notified when physical parameters increase to dangerous levels (370/395, 93.7%), observing connections between one's symptoms or diseases or biological parameters (339/398, 85.2%), viewing the evolution of one's health in function of time (333/394, 84.5%), and viewing information about the expected effect of treatment (349/395, 88.4%). Almost 90% (369/412) of respondents were interested in using a patient portal. Determinants of patients' attachment for obtaining health information on a patient portal were (1) age between 45 and 54 years (P=.05); (2) neutral (P=.03) or interested attitude (P=.008) toward shared decision making; and (3) commitment to question physicians' decisions (P=.03, R2=0.122). Determinants of patients' expectations on improved health care by accessing a patient portal were (1) lower education level (P=.04); (2) neutral (P=.03) or interested attitude (P=.008) toward shared decision making; and (3) problems in understanding health information (P=.04; R2=0.106). CONCLUSIONS:The interest in using a patient portal is considerable in Flanders. People would like to receive alerts or some form of communication from a patient portal in case they need to act to manage their health. Determinants such as education, attached importance to shared decision making, difficulties in finding relevant health information, and the attached importance in questioning the decisions of physicians need to be considered in the design of a patient portal.

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Dataset Information

Designing a patient-centered user interface for access decisions about EHR data: implications from patient interviews.

Background

Objective

Design

Setting

Participants

Approach

Key results

Conclusions

Publications

Designing a patient-centered user interface for access decisions about EHR data: implications from patient interviews.

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