By Makda Zewde
In his 2015 State of the Union address, former president Barack Obama announced the launch of the $215 million dollar Precision Medicine Initiative, a national effort to accelerate biomedical discovery that can better tailor healthcare to the needs of individual patients. This emerging approach to medicine has already shown immense potential in the treatment of certain diseases, such as cancer, where genetic tests are frequently used to identify the most effective treatments for a patient. To expand upon this success, the NIH launched the All of Us Research Program, a longitudinal research program that aims to collect health data on one million or more people living in the United States over many years. Using this broad dataset, the program aims to improve our understanding of a wide range of factors – biology, lifestyle, and environment – that contribute to health, and apply this understanding toward more evidence-based, individualized healthcare.
Image | by Jannie Bolotnikov
In 2016, Northwestern University became one of over 50 HPOs across the country to receive the All of Us Health Care Provider Organization Award. The designation involves building research protocols as well as enrolling individuals and collecting health data. Over the next five years, the $60 million award will be distributed across five medical centers in Illinois: Northwestern University, The University of Chicago, Rush University Medical Center, NorthShore University HealthSystem, and the University of Illinois at Chicago, which together make up the Illinois Precision Medicine Consortium. So far, more than 3,000 full participants – those who have provided general and electronic health record consent and completed in-person visits for biosamples and physical measurements – have enrolled through the consortium. More than 31,000 have enrolled nationally.
In addition to its designation as an HPO for theprogram, the Northwestern center is also involved in developing tools to integrate and curate electronic health record (EHR) data from multiple institutions. Dr. Firas Wehbe, Northwestern Medicine’s Chief Research Informatics Officer, explained that this has been a ratelimiting step for the program. In order to facilitate the kind of large scale discovery anticipated from the All of Us program, data from multiple healthcare systems need to be integrated into a common data model. Even EHR systems within the same institution may require integration – Northwestern University’s various EHR systems, for example, had not been unified into a common data model until March of this year.
About the Author
Makda Zewde is an M.S. student in the Biostatistics program at Northwestern University. For the past two years, she has been working as a technician in the Nakamura Lab at the University of Chicago, where she became interested in personalized medicine and the role of big data analytics in improving public health. Outside the lab, she enjoys museums, watching live music and discovering new coffee shops around the city.