Do Electronic Records Cause Patients To Withhold Information From Their Doctors? Interview
Celeste Campos-Castillo PhD
Assistant Professor
Department of Sociology
University of Wisconsin-Milwaukee

Medical Research: What are the main findings of the study?

Dr. Campos-Castillo: Approximately 13% of adults in the U.S. have held back information from doctors out of privacy or security concerns. When we compare adults with the same characteristics (e.g., age and education, overall health, and health care characteristics like having insurance and seeing a doctor in the past year) based on whether their doctor uses an electronic health record (EHR) system or not, we find that those with a doctor that uses an electronic health record were more likely to hold back information than those whose doctor does not use an electronic health record.

Other studies have looked at whether electronic health records are related to withholding information out of privacy concerns, but the evidence was mixed: sometimes patients with EHRs were more likely to hold back information from doctors, other times there but sometimes there was no difference in withholding between patients of doctors who used EHRs and those who did not.

What makes our study unique is that we consider a range of factors in the analysis that can disguise the real relationship between EHRs and withholding information because of privacy concerns. In particular, we take into account how patient ratings of quality of care play a complicated role in this situation. Patients with doctors who use EHRs often rate the quality of care they receive higher than those with doctors who are not using these systems. At the same time, higher quality ratings generally mean that patients feel comfortable sharing information with doctors, even the sensitive information that we tend to keep to ourselves. Because quality ratings are associated both with EHRs and with holding back information from doctors, it is necessary to consider this in the analysis. Otherwise – as we show in the study – we would mistakenly conclude that EHRs are unrelated to holding back information. Instead, we show that when we accurately compare patients with the same characteristics, including quality ratings, patients with EHRs are more likely to withhold information from their doctors out of concerns for privacy.

Medical Research: Were any of the findings unexpected?

Dr. Campos-Castillo: Previous studies failed to consider the important role of quality ratings in the relationship between EHRs and patient withholding of information, so it was important for us to explore and show that in our analysis.

Medical Research: What should clinicians and patients take away from your report?

Dr. Campos-Castillo: When patients hold back information from their doctors, they may receive poorer care. For example, complete health records are necessary to identify appropriate treatment and help doctors and researchers identify patterns in the patients who have certain health conditions. We need to address anything that increases the likelihood that patients hold back information to improve the care people receive. Our research suggests that the perceived privacy and security risks of electronic health records may be one such thing. Patients should discuss their concerns with clinicians, and clinicians should address privacy issues directly with patients, assuring them about the confidentiality of health information in electronic health records. It is important to recognize that what appear to be merely problems associated with EHRs can directly affect the relationship patients have with their doctors and the quality of care they receive

Medical Research: What recommendations do you have for future research as a result of this study?

Dr. Campos-Castillo: Because we relied on survey responses that were collected at one point in time, we cannot determine whether having a doctor that uses an electronic health record directly causes people to hold back information. More research is needed to determine causality and the interconnections between electronic health records, quality of care, and patient disclosure. It may be the case that only some patients, or particular groups, are concerned about privacy, and if so, clinicians may be able to address these concerns so that all patients trust them and provide the necessary information for the best health care possible.


The double-edged sword of electronic health records: implications for patient disclosure

Celeste Campos-Castillo, Denise L Anthony

J Am Med Inform Assoc amiajnl-2014-002804Published Online First: 24 July 2014 doi:10.1136/amiajnl-2014-002804

Last Updated on December 21, 2014 by Marie Benz MD FAAD