By Chris Burrow, MD, EVP for Medical Affairs
This week, I’m very excited to participate in the NIH's Precision Medicine Working Group workshop, taking place in Nashville, Tennessee. Entitled, “Digital Health Data in a Million-Person Precision Medicine Initiative Cohort” the two-day public workshop will focus on the public health benefits of managing and gathering health information.
In particular, I am very excited to have been invited to join colleagues from the University of Pennsylvania, the American Sleep Apnea Association, and Sage Bionetworks for a panel discussion called “Possibilities for Direct-from-Participant Data.”
Precision medicine can dramatically improve clinical outcomes with individually-tailored approaches to diagnosis and treatment, chronic care management and also disease or disability prevention. I look forward to discussing, with colleagues in technology, biomedical research, and patient advocacy, how we can accelerate the development of precision medicine using new mobile health technologies.
Much of the conversation has been centered around the idea of patients generating validated physiological data from accurate biometric sensors and providing other data through patient surveys. If we add the ability for patients to access and contribute their medical records data, the possibilities become very exciting.
Today, using apps they have chosen, patients can receive coded structured data from their physician or hospital electronic medical record (EMR) systems or Medicare and Medicaid billing systems. These apps let patients better coordinate their care, monitor their health, and can also give them the ability to contribute data which accurately describes their clinical conditions, medications and other useful health information.
Using these new mobile technologies, precision medicine researchers can work with truly accurate complete medical history and clinical data. This is light years better than working with incomplete and often-inaccurate self reported data from surveys and forms. And compared to the dated survey approach, these apps can also reach a much larger group of patients willing to contribute their information to research.
With our iBlueButton app, Humetrix provides a complete, three-year longitudinal record of health care encounters, diagnoses and medications. The app is available to millions, including Veterans treated in the VA system and the 48M Americans covered by Medicare.
When added to personal annotations and biometric sensor information, this health history, from app users who electively consent to contribute their information, can be a tremendous source of data for the Precision Medicine Initiative. Apps like iBlueButton or our Tensio app, the first in a series of chronic care management apps, have been built to not only allow patients to receive and annotate their data, but also share to share that data with whomever they choose – whether they be providers or researchers.
I look forward to sharing our company vision for universal access to medical records, and discussing ways we will contribute to the promise of the Precision Medicine Initiative.
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