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