Medical Records Confidentiality and Public Health Research: Two Values at Stake? An Italian Survey Focus on Individual Preferences

Abstract

In a time when Europe is preparing to introduce new regulations on privacy protection, we conducted a survey among 1700 twins enrolled in the Italian Twin Register about the access and use of their medical records for public health research without explicit informed consent. A great majority of respondents would refuse or are doubtful about the access and use of hospital discharge records or clinical data without their explicit consent. Young and female individuals represent the modal profile of these careful people. As information retrieved from medical records is crucial for progressing knowledge, it is important to promote a better understanding of the value of public health research activities among the general population. Furthermore, public opinions are relevant to policy making, and concerns and preferences about privacy and confidentiality in research can contribute to the design of procedures to exploit medical records effectively and customize the protection of individuals’ medical data.

Significance for public health

Information retrieved from medical records is critical for public health research and policy. In particular, large amounts of individual health data are needed in an epidemiological setting, where methodological constraints ( e.g. follow-up update) and quality control procedures very often require data to be re-identifiable. Concern about European regulation affecting access to medical records seems to be widespread in the scientific community. Highlighting individuals’ concerns and preferences about privacy and informed consent regarding the use of health data can support policy making for public health research. It can contribute to the design of procedures aiming to extract the greatest value from medical records and, more importantly, to create a system for the protection of personal data tailored to the needs of different people.