Designing a Patient-Centered User Interface for Access Decisions about EHR Data: Implications from Patient Interviews

Caine, Kelly; Kohn, B A Spencer; Lawrence, Carrie; Hanania, Rima; Meslin, Eric M.; Tierney, William M.

doi:10.1007/s11606-014-3049-9

Cited by 59 publications

(61 citation statements)

References 25 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Although patients overwhelmingly desire control over their electronic health information, preferences for sharing personal information with others vary widely. 17,21,22 Affording patients the ability to specify preferences and consent for sharing health information through granular privacy control is now technically feasible, and is actively being studied. 23,24 Granular role-based functionality allows patients the ability to selectively authorize which individuals may interact with the health system on their behalf, as well as what specific privileges they are granted.…”

Section: Capturing and Executing Patient Preferences For Familymentioning

confidence: 99%

Family Caregivers and Consumer Health Information Technology

2015

View full text Add to dashboard Cite

Health information technology has been embraced as a strategy to facilitate patients' access to their health information and engagement in care. However, not all patients are able to access, or are capable of using, a computer or mobile device. Although family caregivers assist individuals with some of the most challenging and costly health needs, their role in health information technology is largely undefined and poorly understood. This perspective discusses challenges and opportunities of engaging family caregivers through the use of consumer-oriented health information technology. We compile existing evidence to make the case that involving family caregivers in health information technology as desired by patients is technically feasible and consistent with the principles of patient-centered and family-centered care. We discuss how more explicit and purposeful engagement of family caregivers in health information technology could advance clinical quality and patient safety by increasing the transparency, accuracy, and comprehensiveness of patient health information across settings of care. Finally, we describe how clarifying and executing patients' desires to involve family members or friends through health information technology would provide family caregivers greater legitimacy, convenience, and timeliness in health system interactions, and facilitate stronger partnerships between patients, family caregivers, and health care professionals.KEY WORDS: health information technology; electronic health records; family caregivers.

show abstract

Section: Capturing and Executing Patient Preferences For Familymentioning

confidence: 99%

Family Caregivers and Consumer Health Information Technology

2015

View full text Add to dashboard Cite

show abstract

“…We have previously published the requirements for capturing patients' preferences for viewing information in their EHRs 19 and an ethics framework for following FIP principles in health care. 20 Articles published elsewhere in this JGIM supplement describe the process of designing the patient preference program, 21 and challenges that had to be overcome to incorporate it into Careweb to control the display of EHR data to clinicians. 22 In this article, we report the results of a demonstration study where we implemented this patientcontrolled EHR access program in a single primary care clinic in Eskenazi Health's large urban primary care network and prospectively assessed its effects on EHR data displays and providers' reactions.…”

Section: Introductionmentioning

confidence: 99%

Provider Responses to Patients Controlling Access to their Electronic Health Records: A Prospective Cohort Study in Primary Care

et al. 2014

Self Cite

View full text Add to dashboard Cite

INTRODUCTION:Applying Fair Information Practice principles to electronic health records (EHRs) requires allowing patient control over who views their data. METHODS: We designed a program that captures patients' preferences for provider access to an urban health system's EHR. Patients could allow or restrict providers' access to all data (diagnoses, medications, test results, reports, etc.) or only highly sensitive data (sexually transmitted infections, HIV/AIDS, drugs/alcohol, mental or reproductive health). Except for information in free-text reports, we redacted EHR data shown to providers according to patients' preferences. Providers could "break the glass" to display redacted information. We prospectively studied this system in one primary care clinic, noting redactions and when users "broke the glass," and surveyed providers about their experiences and opinions. RESULTS: Eight of nine eligible clinic physicians and all 23 clinic staff participated. All 105 patients who enrolled completed the preference program. Providers did not know which of their patients were enrolled, nor their preferences for accessing their EHRs. During the 6-month prospective study, 92 study patients (88 %) returned 261 times, during which providers viewed their EHRs 126 times (48 %). Providers "broke the glass" 102 times, 92 times for patients not in the study and ten times for six returning study patients, all of whom had restricted EHR access. Providers "broke the glass" for six (14 %) of 43 returning study patients with redacted data vs. zero among 49 study patients without redactions (p=0.01). Although 54 % of providers agreed that patients should have control over who sees their EHR information, 58 % believed restricting EHR access could harm provider-patient relationships and 71 % felt quality of care would suffer. CONCLUSIONS: Patients frequently preferred restricting provider access to their EHRs. Providers infrequently overrode patients' preferences to view hidden data. Providers believed that restricting EHR access would adversely impact patient care. Applying Fair Information Practice principles to EHRs will require balancing patient preferences, providers' needs, and health care quality.KEY WORDS: fair information practices; electronic health records; patient preferences; quality of care.

show abstract

“…16 Despite the rapid changes in the technological and regulatory environments, the preferences, expectations, and desires of patients with regard to privacy have remained intact. For example, 100 % of patients in one study, published elsewhere in this JGIM supplement, 17 reported that they would like to know and be able to control what entities accessed information in their EHRs. In a similar study, only 1 % of respondents agreed that "researchers would be free to use my personal medical and health information without my consent at all," and a majority (58 %) of patients agreed that "privacy of personal medical records and health information is not protected well enough today by federal and state laws and organizational practices."…”

Section: S38mentioning

confidence: 99%

“…14 Especially during this transitional phase where health information technology is being rushed into use, is difficult to use, falls short of promises for reducing workload-and in many cases, has increased physician workload 18 -the need for collaboration between physicians and patients is critical. Whether this means respecting patients' wishes to withhold some aspects of their records using granular control mechanisms 17 or talking with patients about the benefits of sharing even sensitive, embarrassing information, providers and patients need to work together from a base of trust to achieve good health care.…”

Section: S38mentioning

confidence: 99%