PROJECT NAME: Incorporating genetic data on PCOR studies: building a road map for stakeholder engagement

ORGANIZATION NAME: Children's Mercy Hospital

PROJECT LEAD: Zohreh Talebizadeh, Ph.D.

Project Summary

An individual’s genetic information has the potential to significantly improve patient health outcomes. Despite the recent emphasis on Precision Medicine, it is still not clear how genetic knowledge can be used in patient-centered outcomes research (PCOR) studies. To guide the development of an effective road map for incorporating such information in PCOR and comparative effectiveness research (CER), stakeholder input needs to be sought. The purpose of this project is to develop a partnership with a wide range of stakeholders to build an infrastructure to engage in research, dissemination, and evaluation of the road map around the concept of using genetic information in PCOR and CER. Developing such an infrastructure and a road map is the first critical step to make use of genetic knowledge in CER that will ultimately improve the quality of medical decision making.

Source: PCORI website