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

Abstract

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.

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

“…The details of the patient preference system are provided in a companion manuscript in this journal supplement. 23 Subjects could choose to restrict access by provider (from a list of all GMC doctors, nurses, and other clinic staff enrolled in the study) and by data: they could allow or restrict access to all data or to specific information within their EHRs, specifically data deemed highly sensitive by the National Committee on Vital and Health Statistics 26 : sexually transmitted infections, HIV/AIDS, sexual health and pregnancy, drug and alcohol use and abuse, and mental health information. For this study, physicians' assistants and nurse practitioners were arbitrarily included with clinical nurse assistants and medical assistants as "other clinic staff," because they were too few to comprise their own category and they serve an intermediary role between nurses and physicians.…”

“…Details concerning patients' preferences and their opinions of this program are contained in the article by Schwartz et al in this JGIM supplement. 23 Approximately half of the study patients wanted all GMC providers to see all of their EHR information; the reminder restricted access to some or all of their EHR information to some or all GMC providers.…”

“…A description of the system patients used to record their preferences, as well as their actual preferences for controlling access to their EHRs are contained in a separate article in this JGIM supplement. 23 …”

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

“…Final selections were stored in Careweb's preference table. As described in detail in the article by Schwartz et al in this JGIM supplement, 21 slightly more than half of the 105 patients enrolled wanted all physicians, nurses, and clinic staff to view all of their data. Five patients wanted no one to view any information in their EHRs.…”

How Bioethics Principles Can Aid Design of Electronic Health Records to Accommodate Patient Granular Control

“…14 - 16 While the evidence of the successful adoption of an ethics-informed EHR is promising, more work is required to determine whether the ethics framework we developed was sufficient for the longer term task of rolling out EHRs that give patients granular control. In this paper, we confront a basic issue that arises when creating and using an ethical framework in EHR design: How can bioethical principles contribute when they are quite general, and if they conflict with one another?…”