Geisinger Health System (GHS) is fully prepared and ?shovel-ready? to participate as a Regional Medical Center Healthcare Provider Enrollment Center for the Precision Medicine Initiative (PMI). GHS is an integrated healthcare delivery system serving regions in New Jersey and Pennsylvania with a total population of >3M, of which a significant portion resides in small towns and rural areas. This area is densely rural, with significant socioeconomic and health disparities. The population is notable for its very low rate of relocation in/out of the area and the large number of multi-generation families receiving their healthcare in this single integrated system. This stability provides tremendous opportunity for genomics research and implementation ? along with a century-old tradition of trust between the system and its patients. In brief, GHS patients represent a generally rural, underserved and lower socio-economic population, an important component of PMI diversity. A pioneer in utilization of EHRs and clinical informatics, GHS adopted Epic in 1996 and now has two decades of longitudinal clinical data on its patients. In addition to Epic, we have a well-established comprehensive enterprise clinical data warehouse, extensive experience extracting clinical information from the EHR and data warehouse and a patient population already partnering with us in precision medicine research. That partnership dates back to 2006 when after extensive engagement with patients and other stakeholders, GHS created a system-wide program for genomics research, the MyCode Community Health Initiative. MyCode is designed to recruit participants, regardless of health or disease status, from the health system and now provides an effective framework for precision medicine research and implementation of genomic medicine through a return of results program. To date, MyCode has enrolled ?113,000 participants, all of whom have extensive longitudinal EHR data (average of ~13 years) covering primary, specialty, inpatient, and emergency care, as well as geocoding for integration with public databases including environmental data. MyCode closely mirrors the proposed design of the national PMI cohort including participant engagement; informed consent for broad research use; data sharing and return of results; longitudinal EHR data; collection of additional participant data via diverse mechanisms and engagement strategies (online patient portal, mobile technologies, mail and telephone surveys, and in-person interactions). MyCode demonstrates GHS?s capabilities in precision medicine. We propose to leverage our MyCode experience and infrastructure with the additional elements defined by the PMI Steering Committee to create a separate PMI recruitment initiative at GHS. The combination of a large stable population and a long standing trusting relationship makes Geisinger the perfect place for longitudinal studies like the PMI.
| Huang, Elaine; Cauley, Jacqueline; Wagner, Jennifer K (2017) Barred from better medicine? Reexamining regulatory barriers to the inclusion of prisoners in research. J Law Biosci 4:159-174 |
| Wagner, Jennifer K; Peltz-Rauchman, Cathryn; Rahm, Alanna Kulchak et al. (2016) Precision engagement: the PMI's success will depend on more than genomes and big data. Genet Med : |
