In the words of our patient partners, “PaTH is patient-empowered research.” PaTH’s mission is to address questions and concerns that matter most to the communities we serve in order to make more informed health decisions.
PaTH is a Clinical Data Research Network comprised of Geisinger Health System, Johns Hopkins University, Johns Hopkins Health System, Penn State College of Medicine, Penn State Milton S. Hershey Medical Center, Temple Health System, Lewis Katz School of Medicine at Temple University, the University of Pittsburgh, UPMC and UPMC Health Plan, the University of Utah, and University of Utah Health Care.
We propose to build on our success over the past 12 months in:
- linking electronic health record (EHR) data across four diverse healthcare systems so that it can be used to answer questions to improve health and health care, while ensuring patient privacy;
- engaging patients and clinicians to identify critical research questions for improving health care and to participate in research; and
- developing convenient survey methods to let patients share their perspectives on health topics with their healthcare teams.
We will expand our network to ensure geographic diversity and bring researchers with critical skills (e.g., natural language processing) to help PaTH reach its data goals. PaTH is strongly supported at the highest levels of partnering institutions.
We have engaged patients and clinicians with an interest in three health conditions: atrial fibrillation (a heart rhythm problem), idiopathic pulmonary fibrosis (a rare lung disease), and health behaviors/weight management. Patient partners are central members of our regulatory process, and are integrated throughout PaTH’s governance. Moving forward, we will develop avenues to expand the involvement of patients, clinicians, and other stakeholders in clinical research. We are developing a network of clinical champions and a registry of clinical practices willing to partner with PaTH—and will support these sites as they engage in research projects. We will expand options for stakeholder communication using online forums, patient registries, and an audio library of patient stories. We will broaden our approaches for making sure that research findings are communicated to the people who need them most. We will continue to streamline the research process and emphasize methodologic excellence.
PaTH is fully engaged in PCORnet, eagerly collaborating with other PCORnet institutions and PCORnet studies. We look forward to contributing information to PCORnet queries as Phase II of PCORnet moves forward. By combining EHR summary data with other data across the country, we hope to help answer critical health questions. Our outstanding information technology teams have developed a robust data infrastructure and governance policies. We maintain analysis-ready, quality-checked, and regularly refreshed data sets that meet regulatory and legal requirements. Data for over 1.3 million individuals are currently included in our common data model, and we are actively pursuing strategies for expanding this group, enhancing data completeness, and ensuring network sustainability.
View more about this project on PCORnet.org.
^Rachel Hess, MD, MS, at the University of Pittsburgh was the principal investigator for Phase I of this project.