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

Introduction: Previous studies have measured individuals’ willingness to share personal information stored in an electronic health record (EHR) with healthcare providers. But none have measured preferences when patients’ choices determine access by healthcare providers. Methods: Patients were given the ability to control the access of doctors, nurses or 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 and opinions regarding the process. Results: Of 139 eligible patients who were approached, 105 (75.5%) were enrolled and preferences were collected from 105 of them (100%). Sixty patients (57%) did not restrict access by any providers. Of the 45 patients (43%) who chose to limit the access of at least 1 provider, 36 restricted access only to all personal information in the EHR, while 9 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 5 (4.8%) denied access to alldoctors, 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 when facing decisions of this sort, and to identify the impact of educating patients regarding information contained in the EHR and its use in clinical care