Giving patients granular control of personal health information: Using an ethics ‘Points to Consider’ to inform informatics system designers

Meslin, Eric M.; Alpert, Sheri; Carroll, Aaron E.; Odell, Jere D.; Tierney, William M.; Schwartz, Peter H.

doi:10.1016/j.ijmedinf.2013.08.010

Cited by 31 publications

(30 citation statements)

References 24 publications

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“…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

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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.

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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

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“…Our findings thus re-emphasize the need for any system of granular control to be coupled with an efficient and meaningful system for educating patients on the type of information included in the EHR, who uses it and why and how, and the potential impacts of restricting access to data. 4 Like all studies, our work has limitations that warrant consideration. First, we utilized a simple patient interface for stating choices, and there was no educational intervention regarding the content and use of data in the EHR beyond simply listing types of information that it contains.…”

Section: Discussionmentioning

confidence: 97%

“…Are there situations (e.g., during life-threatening emergencies) where providers should be allowed to override the patients' data-sharing preferences? 4,6 To address these questions, designers of EHRs need a better understanding of patients' perspectives regarding control of personal information. Previous research has investigated patient preference with respect to sharing EHR data with both health care providers (e.g., physicians) and non-provider recipients (e.g., family members).…”

Section: Introductionmentioning

confidence: 99%

Patient Preferences in Controlling Access to Their Electronic Health Records: a Prospective Cohort Study in Primary Care

et al. 2014

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INTRODUCTION:Previous studies have measured individuals' willingness to share personal information stored in electronic health records (EHRs) with health care providers, but none has measured preferences among patients when they are allowed to determine the parameters of provider access. METHODS: Patients were given the ability to control access by doctors, nurses, and other staff in a primary care clinic to personal information stored in an EHR. Patients could restrict access to all personal data or to specific types of sensitive information, and could restrict access for a specific time period. Patients also completed a survey regarding their understanding of and opinions regarding the process. RESULTS: Of 139 eligible patients who were approached, 105 (75.5 %) were enrolled, and preferences were collected from all 105 (100 %). Sixty patients (57 %) did not restrict access for any providers. Of the 45 patients (43 %) who chose to limit the access of at least one provider, 36 restricted access only to all personal information in the EHR, while nine restricted access of some providers to a subset of the their personal information. Thirty-four (32.3 %) patients blocked access to all personal information by all doctors, nurses, and/or other staff, 26 (24.8 %) blocked access by all doctors and/or nurses, and five (4.8 %) denied access to all doctors, nurses, and staff. CONCLUSIONS: A significant minority of patients chose to restrict access by their primary care providers to personal information contained in an EHR, and few chose to restrict access to specific types of information. More research is needed to identify patient goals and understanding of the implications when facing decisions of this sort, and to identify the impact of patient education regarding information contained in EHRs and their use in the clinical care setting.

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“…1 Fully applying Fair Information Practice Principles to electronic health records (EHRs) would require giving patients the ability to control who has access to specific information within their EHRs, which could have a number of important clinical, ethical, and legal consequences. 2 We have previously shown that most patients do desire to have such control over their EHR information but have widely divergent opinions about who should have access and what information they should be able to see. 3 We found that 100 % of patients without sensitive EHR information were willing to provide their primary care physicians (PCPs) with full access to their EHRs, as would 90 % of those with sensitive information.…”

Section: Introductionmentioning

confidence: 99%

“…Similarly, clinicians, health system leaders, and patient advocates are also likely to have divergent opinions of the benefits, risks, and impact on patient care from patients' having control over access to their EHRs. 2,4 Although scholars have identified clinical, ethical, and legal challenges in providing patients with control of their EHR data, 2 there is a paucity of literature describing technical approaches to implementing such a policy. Under contract to the National Coordinator for Health Information Technology, we developed and implemented a system for obtaining and following patients' preferences for EHR access.…”

Section: Introductionmentioning

confidence: 99%

Designing a System for Patients Controlling Providers’ Access to their Electronic Health Records: Organizational and Technical Challenges

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Giving patients granular control of personal health information: Using an ethics ‘Points to Consider’ to inform informatics system designers

Cited by 31 publications

References 24 publications

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

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

Patient Preferences in Controlling Access to Their Electronic Health Records: a Prospective Cohort Study in Primary Care

Designing a System for Patients Controlling Providers’ Access to their Electronic Health Records: Organizational and Technical Challenges

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