The ICTR Biomedical Informatics team and the SMPH IT group worked with their partners in the Greater Plains Collaborative (GPC), to develop and validate a common data model that will allow researchers to use a single database query across the 13 clinical research data networks (CDRNs) that form the national Patient-Centered Clinical Research Network (PCORnet).
CDRNs allow queries to electronic health record data that originate in healthcare systems such as hospitals, health plans, or practice-based networks and securely collect real-time, real-world health information during the routine course of patient care. Participating in the PCORnet common data model means UW Health system EHR data is accessible to investigators nationwide (and vice versa) for multi-site studies. Tom Mish, SMPH senior systems programmer and UW project lead for GPC comments,
This new functionality led us in a really exciting direction. As part of Phase I case study testing for the GPC network, UW has shared data for research cohorts in three specific areas: Healthy Weight, Breast Cancer, and Amyotrophic Lateral Sclerosis (ALS).
ICTR BMI took advantage of this collaboration goal to develop and fast-track a novel recruitment tool at UW that had long been dreamed of by our biomedical informatics group.
Novel Recruitment Approach Arises from CDRN Case Study
Recruitment for research studies is recognized as a national challenge that can severely limit the execution of otherwise excellent clinical research studies. The BMI group collaborated with the UW Health Information Systems team to utilize MyChart as a recruitment tool. MyChart is the Epic (Health Link) EHR patient portal used for communicating with patients and scheduling medical care.
With the support of UW Health leadership and the UW Patient Family Advisory Council, 5,000 patients were sent MyChart messages inviting them to participate in a research study. This initial UW Health Research pilot study used a REDCap form developed by the GPC querying patient willingness and desire to participate in the GPC Healthy Weight Cohort. The study used an IRB approval deferred to the University of Texas Health Science Center at San Antonio as the common IRB of record, was administered at UW through MyChart, and the resulting data was shared back to GPC.
The very strong response rate (20% responding; 82.5% of respondents agreeing to participate) demonstrated proof-of-concept for recruiting research participants, obtaining informed consent, and administering research surveys using MyChart. Umberto Tachinardi, MD, PhD, ICTR director for Biomedical Informatics, notes,
By combining EHR de-identified data, MyChart, and REDCap tools, we will be able to develop targeted research tools to directly communicate in a limited time period, with large pools of patients eligible for single research projects.
This service will facilitate recruitment for a significant number of investigators and joins our existing options to improve recruitment, such as feasibility assessment and cohort analysis during study planning among others.
Closing the circle, researchers from across the GPC led by Larry Hanrahan (UW Department of Family Medicine) and Ann Davis (Children’s Mercy Hospital, Kansas City), plan to use the survey data gathered in the pilot study to further investigate electronic recruitment methodology and compare health factors recorded in institutional EHRs to the patient-supplied survey results from the GPC pilot study.
Investigators interested in accessing this PCORnet resource or the new MyChart-based recruitment tools should contact Tom Mish.