Policies for patient access to clinical data via PHRs: current state and recommendations

OBJECTIVE Healthcare delivery organizations are increasingly using online personal health records (PHRs) to provide patients with direct access to their clinical information; however, there may be a lack of consistency in the data made available. We aimed to understand the general use and functionality of PHRs and the organizational policies and decision-making structures for making data available to patients. MATERIALS AND METHODS A cross-sectional survey was administered by telephone structured interview to 21 organizations to determine the types of data made available to patients through PHRs and the presence of explicit governance for PHR data release. Organizations were identified based on a review of the literature, PHR experts, and snowball sampling. Organizations that did not provide patients with electronic access to their data via a PHR were excluded. RESULTS Interviews were conducted with 17 organizations for a response rate of 81%. Half of the organizations had explicit governance in the form of a written policy that outlined the data types made available to patients. Overall, 88% of the organizations used a committee structure for the decision-making process and included senior management and information services. All organizations sought input from clinicians. Discussion There was considerable variability in the types of clinical data and the time frame for releasing these data to patients. Variability in data release policies may have implications for PHR use and adoption. CONCLUSIONS Future policy activities, such as requirement specification for the latter stages of Meaningful Use, should be leveraged as an opportunity to encourage standardization of functionality and broad deployment of PHRs.