A majority of patients want notification about the potential uses of their medical records or samples according to a study published in JAMA. A team of University of Michigan researchers found that patients would like to know when their data and biospecimens are used for research purposes by commercial biomedical companies or universities. The findings have implications for policy development about patient information sharing with universities and biotechnology companies and handling of identifiable information accompanying data or samples.
The study included a survey of more than 2,000 American adults who engaged in an educational exercise before completing the survey about situations involving notification. Survey respondents watched a video about a fictitious patient and rights regarding third party access to patient data and samples. Respondents then indicated their preferences for notification for eight different scenarios using a four-point scale.
The study revealed patients want notification if commercial researchers use their identifiable health information. The patients were also slightly more concerned with use of personal data than use of biospecimens. Lead author Dr. Kayte Spector-Bagdady explains, “We hope that our research can help settle the ongoing policy question of whether we should make expensive and limiting changes to our research structure to offer higher protections to biospecimens versus health information, as well as help guide related choices in the future.” Insights gained from the study can be used to define patient rights and create efficient medical research processes with existing data.
Ethical use of existing patient data is a valuable form of scientific recycling. Clinical care appointments commonly involve collection of blood, urine and other biomedical samples and results that are compiled in digital patient files. Research using medical records and samples can be used to research preventative disease care treatments without exposing patients to potential risks or discomfort of treatment. Researchers generally do not know the names and personal data associated with samples and must follow guidelines protecting patient confidentiality and rights.