Department of Medicine 2016 Tech Challenge

New Uses of Information Technology to Advance the Missions of the Department of Medicine

Develop the Infrastructure for Any Investigator to Build a Web-Based Cohort Study

Idea Status: 

Cohort studies are a critical component of clinical and translational research. They provide data on the natural history of disease, biobank specimens for translational studies and often provide a framework from which one can recruit for clinical trials. Traditional cohort studies also have many drawbacks. Data collection is often still performed on paper and management is usually centralized at a data-coordinating center with limited ability for interested investigators to obtain transparent, real-time information on data and specimens available for study. Furthermore, these studies only collect data at scheduled study visits often separated by long periods of time and require patients to travel to the institution for data collection. Frustration with the lack of transparency, limited data collection as well as the glacial pace of clinical research provided inspiration for the development of mobile and web-based platforms for cohort studies. These platforms revolutionized data collection, allowing data to be obtained at virtual study visits as well as throughout the intervening period via mobile and web-based applications and sensors. They also allowed investigators to share data with patients increasing patient involvement. At present, this form of observational cohort is limited in its ability to biobank specimens. In addition, study retention and engagement are important challenges, particularly when patients do not have a face-to-face meeting with a clinician and study coordinator. 

I propose that the DOM provide infrastructure to create a hybrid model that would allow investigators to enroll patients from clinical sites into mobile or web-based cohort studies with biobank integration and a HIPAA compliant cloud storage solution.  The patients will then remain tethered to the study through mobile and web-based applications, which can significantly decrease the frequency of brick and mortar study visits and increase the frequency of data collection. The DOM would provide the following:

  1. Template for creation of a web-based tool for data collection
  2. Cloud based HIPAA compliant data storage solution
  3. Biobank interface
  4. Relationships with common APIs including transactional email platform, customer support software, etc.
  5. A location where mobile tools and sensors can be shared across disciplines

The goal of developing this infrastructure is to decrease the activation energy needed for investigators to create their own modern cohorts.

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