Research use of electronic health records: patients ’ perspectives on contact by researchers

The objective of this study was to explore patients ’ attitudes and opinions about potential contact by researchers who have had access to their EHRs.Materials and methodsWe conducted 15 focus groups in four diverse counties in the southeastern United States. We designed vignettes to describe different situations in which researchers conducting a hypothetical study might have reason to consider contact with patients.ResultsMany patients believed it was important for researchers to take action if they discovered information suggesting a current serious health concern. Relaying the information through patients ’ physicians was considered the most appropriate course of action. Across vignettes, there were significant differences between urban and rural sites.Discussion and conclusionsResearchers may increasingly encounter situations involving contact with patients following EHR phenotyping. They should carefully consider the possibility of such contact when planning their studies, including the time and expertise needed to adjudicate potentially serious discrepancies. Our focus group results are one source of input for the development of ethical approaches to the research use of EHRs.
Source: Journal of the American Medical Informatics Association - Category: Information Technology Source Type: research