The PCORI CDRN ‘PaTH Towards a Learning Health System in the Mid-Atlantic Region’ and a New Model for Biospecimen Collaboration Serving Rare Disease Networks
Abstract: University of Pittsburgh is leading the PaTH (Pitt/Penn State, Temple and Hopkins) Patient Centered Outcomes Research Institute (PCORI) Clinical Data Research Network (CDRN) project which is focused on building a Learning Health System (LHS) for the Mid-Atlantic region. This seminar provides an update on this important project and highlights the work of our partners at Penn State, Temple and Hopkins. This ambitious program which began in March 2014 is to share 11 million patients electronic medical record data for the purposes of pragmatic clinical trials across the country by September 2015. This is important long needed work that will serve translational research in a transformative fashion...if successful. In addition to the ambitious goals of electronic medical record data sharing there are as ambitious goals on recording patient reported outcomes data so critical to the mission of PCORI as well as Francis Collin’s goal (as board member of PCORI) to share 100M biospecimens across the PCORNet (PCORI Network) as well. We will also present our team’s model for attempting to link the i2b2/SHRINE infrastructure we are using for PaTH to the work Rebecca Jacobson and her team are doing with the "Text Information Extraction System (TIES)" for the purposes of developing a sustainable model for rare disease translational research. This colloquium will focus on the important work the Department of Biomedical Informatics will play in PaTH, PCORI and in translational research going forward.