The National Institutes of Health has awarded a Duke researcher more than $1 million in order to study the ethical use of patient health records.
The project—lead by Laura Beskow, co-director of the Program for Empirical Bioethics—will look at how patients feel about the use of their health data. As electronic health records have become more widespread, it has become easier to use patient information for research purposes. While this can be beneficial for researchers, it remains unclear how patients perceive their data being used in this way. Although the project only involves patient interviews and analysis, the grant funding it is more than twice the amount of the average research grant given by the NIH in 2013.
This project, however, has significant expenses associated with it, Beskow wrote in an email Nov. 12.
"This money pays for, among other things, the highly trained research staff needed to conduct this kind of research [and] expenses associated with traveling to four different sites around the country," Beskow wrote.
In general, bioethics research is less costly than other types of research, Beskow explained.
“Empirical bioethics projects are quite strikingly inexpensive,” Beskow wrote. “Unlike many other kinds of biomedical research, empirical bioethics research does not involve costly drugs, laboratory equipment, clinical assessments, [et cetera]."
Beskow has been given $1,138,300 over two years for her research. The average size of NIH Research Project Grants in 2013 was $441,406.
The project team will ask nearly 400 patients across the Southeast how they feel about their medical information being used for research and see how they respond to being contacted by researchers.
Kevin Weinfurt, co-director of the Program for Empirical Bioethics, said that Beskow's grant was in fact small compared to other grants. He also noted that not all the funding is allocated to the direct costs of the project and some of it goes towards overhead costs. Beskow noted that the scope of the project is quite large and will require a significant supporting staff.
"[We will pay] compensation for research participants’ time to participate in these activities, the trained staff time needed to systematically code, analyze and interpret all of the data and expenses associated with disseminating the results," Beskow wrote.
The research is being conducted as part of the Program for Empirical Bioethics, which researches bioethics and attempts to use that research to create policy impacts.
“The mission of our program is first to identify emerging ethical issues and underlying questions that need to be answered, and then second of all, to develop and conduct research studies to answer those questions,” Weinfurt said.
He added that projects such as Beskow's will hopefully have an immediate impact on the policy landscape.
“We try to identify those issues that really are a problem right now and collect data on those and have a plan for making sure we are getting information to the right people to change policy and practices as soon as possible,” Weinfurt said.
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