No talking signPatients are concerned about private risks of personal health data, resulting in some patients not disclosing certain information to health providers to protect their perceived EHR privacy and security risks.

Peoples’ mixed feelings about sharing personal health information with their providers and EHRs is explored in The double-edged sword of electronic health records: implications for patient disclosure, published in the July 2014 issue of JAMIA, the Journal of the American Medical Informatics Association (AMIA).

“The perception of the [EHR] technology may elicit non-disclosure as a privacy-protecting behavior,” the authors warn.

Celeste Campos-Castillo and Denise Anthony, the paper’s researchers who work in sociology, looked at research into patients who may feel they have stigmatizing health conditions or personal histories and tend to limit disclosure to providers as a means of managing these risks. As providers’ adoption of EHRs continues to grow, the authors assessed whether EHRs would mitigate these risks and prompt more patients to share. To sort out this question, the researchers performed a multivariate analysis on data from the 2012 Health Information National Trends Survey conducted by the National Cancer Institute.

The authors describe this situation as a “double-edged sword” because patient disclosure is shaped by their perceptions of quality of care and whether the provider used an EHR. In addition, whether people live in a small rural geography or have a stigmatizing health condition also compel some people to hide certain information. In addition, patients’ immigrant status can shape their disclosure, with concerns about security risks that may compromise drawing attention of immigration officials.

The implications include educating patients on the positive attributes and benefits of EHRs in patient care while transparently and openly discussing the privacy and security risks — and especially how the provider’s policies and technologies mitigate such risks. The authors note that while patients sign off on HIPAA forms in provider offices, these notices are superficial. One-on-one conversations “may go a long way for providers to engage directly with patients about their privacy concerns and EHR usage,” the authors conclude.

Health Populi’s Hot Points: Most patients willingly share information with providers, the authors find. When patients do not share, there can be serious impacts on peoples’ health outcomes.

The authors’ recommendation of having face-to-face discussions with people about EHRs’ benefits and risks could have several positive results. First, patients would better understand the nature of the electronic health record and the rationale for moving from paper-based files to digitized formats. Second, patients could be re-informed about their health data rights, which could bolster the provider’s Stage 2 Meaningful Use position vis-a-vis Patient Engagement. And finally, this conversation could be the start, or continuation, of a dialogue of shared decision-making, motivation patient engagement and activation and a virtuous cycle of health literacy, competent self-care, and improved outcomes.