In a recent segment on NPR’s Morning Edition, commentators discuss the potential of using electronic health records to customize medical treatments.
Dr. Harlan Krumholz, a professor of medicine at Yale University, says comparing data in electronic health records with genomic information holds great promise for customizing individual treatments, but he warns that the quality of data collected in the medical record is not research quality. While researchers are making a positive start with initiatives such as the Precision Medicine Initiative (re-branded as the All of Us research program), medicine still has a long way to go to fully realize the potential of these data.
Dr. Harlan Krumholz will be presenting at an upcoming NIH Collaboratory Grand Rounds on January 13 from 1:00 – 2:00 p.m. ET. “What’s Next: People-Powered Knowledge Generation from Digital Health Data.” Join the meeting here.
The full article and audio can be found on NPR Shots, an online channel for health stories from the NPR Science Desk.
On September 17, the Precision Medicine Initiative Working Group presented to NIH Director Dr. Francis Collins a detailed design framework to advance the creation of a national, large-scale research cohort for developing more effective treatments tailored to individuals. The framework makes recommendations on cohort assembly, participant engagement, data, biological specimens, policy, and governance. The recommendations are based on a set of high-value scientific opportunities that were identified by the working group following extensive stakeholder engagement.
The NIH plans to move quickly to build the infrastructure so that participants can begin enrolling in the cohort in 2016, with a goal of enrolling at least 1 million participants in 3 to 4 years. Visit the NIH News & Events website for more details.
A recent article in Nature highlights the Precision Medicine Initiative, launched in January 2015 and spearheaded by the National Institutes of Health. Precision medicine is an emerging approach for disease treatment and prevention that takes into account individual variability in genes, environment, and lifestyle for each person. This initiative will involve collection of data on genomes, electronic health records, and physiological measurements from 1 million participants. A main objective is for participants to be active partners in research.
But a major decision faced by the initiative’s working group is how much information to share with participants about disease risk, particularly genetic data. Though there is much debate in the field, the article suggests that public opinion on data sharing may be shifting toward openness.
The Precision Medicine Initiative working group will be releasing a plan soon. For details on the goals of the Precision Medicine Initiative, read the perspective by NIH Director Dr. Francis Collins in the New England Journal of Medicine.