If you had control over biomedical research and how your data was used, would you be more inclined to participate in medical trials?
The usual way — the long-winded consent form, and perhaps a few dollars for your time — doesn’t seem to be working. Biomedical scientists often struggle to rouse enough interest and recruit enough patients to make studies happen, and so a pilot project aimed at bringing patient and doctor together has been launched.
Nonprofit Genetic Alliance has revealed a new website called Reg4All, which allows patients to fine-tune just how their data is used — from sharing it only with particular researchers and institutions to tracking studies and monitoring how and when their information is used.
It is hoped that the system will not only increase patient privacy, but will also help expand biomedical research. By reaching out to patients online, perhaps participating in clinical trials — especially when you’re looking for experimental treatments for uncommon diseases — will become a clearer, less confusing process.
Krishanu Saha, a stem cell engineer at the University of Wisconsin-Madison, believes that people will be more interested in research if they have control over its elements.
“More than just disclosure, a true partnership would involve some sharing of power.”
Reg4All was funded in part by a $300,000 award from the American Liver Foundation. The CEO of the ALF is also planning to trial a project which will place liver disease patients into the Reg4All system.
Continue reading: Technology Review
Image credit: Alex Proimos