Note: This post is one of the first in a series of FasterCures-hosted bloggersations featuring solutions-focused insights from experts and innovators. Please visit the FasterCures blog site to read additional posts, and to join in on the bloggersation.
Electronic medical records (EMRs) can transform our healthcare system by making medical data accessible and available to everyone concerned with a patient’s health. Significant progress, particularly with regard to technology adoption, has been isolated. So, we wave a magic wand creating widespread EMR adoption - what value could we attain, who would benefit, and when?
Researchers who want to improve standards of care and identify predictive markers for treatment efficacy and adverse events would be one set of cross-industry stakeholders who could benefit immediately. Significant barriers to value would still remain. The lack of a consistently-applied, straightforward consent mechanism and the lack of support for molecular data storage and use of genomic data are just two.
The issue of consent is not about big data or technology - it is about trust. The solution is national dialogue on the social, economic and personal benefits of research and participation. Many people (perhaps most?) would participate in research - but only with clarity on the benefits and risks, and the control over who can use their data for what purpose. With expanded adoption of EMRs, this discussion becomes easier. If an EMR contains clinical and genomic data on a person, trips to a research center may never be required - people can consent to have their clinical and genomic data used for research purposes which would largely be computational efforts in data mining and biomarker discovery. Whether we choose existing or novel technologies to implement, the most efficient, cost effective way to further the dialogue would be to broadened consent beyond a specific study. This will address the current patchwork quilt of consent burdening biomedical research. Efforts like ‘Consent To Research’ target this issue.
The issue of broader consent becomes even more important when molecular data is considered. This data has value across areas of research, such as identifying risk factors for rare and common diseases, and finding predictive markers for efficacy and adverse reactions to pharmaceuticals. Requiring narrow consent for specific uses limits efficiency. In addition, current EMRs are not set up to store such data, and the fact that DNA sequence can be generated from different devices with different quality parameters renders platform comparisons suspect. Modules to securely store and process DNA genotype data need to integrated into EMR systems, and those models should be focused on creating a layer of interpretation above the raw genotype data.
Research focused on improving healthcare requires large sample sizes; the effects of genetic factors and other methods for personalizing medicine can be modest. Only by creating consented, large, nationwide sample sets can we reach the statistical power to identify these factors and create the predictive models to personalize healthcare and make more efficient use of our current crop of therapeutic, diagnostic and preventative tools. It will take a magic wand to make this happen in 2012, but making progress on these fronts will ignite faster cures and better health the fastest.
-Leslie Power and Will FitzHugh, 5AM Solutions
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