Summary of Accomplishments
Leadership, management and collaboration
Engagement
Research and knowledge generation
Tools and methods development
Data
UNMC is an active, engaged participant in the Greater Plains Collaborative (GPC) CDRN and PCORnet. Key accomplishments over the past year include: 1) Timely approval of our CDM and responsiveness to queries; 2) Close collaboration with the National Library of Medicine to ensure complete coverage of NDC to RxNorm encoding for all PCORnet members; 3) rapid execution of the SMART IRB agreement and the PCORnet Data Sharing Agreement version 2; 4) Collaboration with PCORnet CRGs and PCORnet Front Door requests and; 5) sharing of technical information concerning data standards and data modeling with PCORnet participants and piloting CDM V4 medication administration table.
Dr. James McClay leads UNMC site activities, is the GPC network co-PI and directs the Biomedical Informatics activities for our regional IDeA funded Clinical and Translational Research Network (GP-CTR). He is supported by Dr. James Campbell who leads data modeling and standards activities for the GPC. The UNMC Steering team includes the medical system VP of research, the vice chancellor of clinical research, representation from the offices of compliance, privacy and security, IRB, sponsored programs and information technology. The Steering committee members review current initiatives and reports from the data request oversight committee (DROC) and research opportunity assessment (ROA) committee. The members of the steering committee engage health system leadership and the research community through regular didactic lectures, and educational sessions, These activities serve to build trust and inform policy and procedure across the research institution including changes to the Conditions of Treatment form to allow opt-out of contact for research and reuse of patient data. Also, members of the steering rapidly executed the SMART IRB agreement and the PCORnet data sharing agreement version 2.0.
The UNMC technical team meets twice a week utilizing TRAC ticketing software to maintain an agile development methodology. These working meetings support tight integration with other GPC site technical teams and ongoing collaborative development. UNMC maintains an open and proactive approach to sharing information, processes and methodologies across PCORnet. Technical specifications are shared on collaborative sites such as the EPIC UserWeb, BitBucket, and the GPC Network wiki. These close relationships allow for lean. low overhead, rapid evolution of the UNMC environment for supporting PCORnet research projects.
At the beginning of UNMCs participation in the GPC CDRN, engagement was a mysterious concept. We undertook broad educational activities to engage clinicians and health system leaders in understanding PCORnet. However, like many sites, progress was slow. We use targetted efforts to engage our researchers in the Collaborative Research Groups in order to reach patients. We also worked closely with health system leadership to allow direct contact to patients identified as eligible for trials. We were fortunate at UNMC to begin leading a regional IDeA funded Clinical and Translational Research Network (GP-CTR) in the last year. The GP-CTR community engagement core collaborates closely with the UNMC PCORnet support team to expand our ability to engage both researchers and the community population. Dr. McClay is instrumental in both initiatives supporting increased engagement activities. Through the GP-CTR we also released a series of pilot funding announcements distributed at the end of 2017 seek projects in engagement and big data science utilizing the UNMC infrastructure designed for the GPC.
We were able to add a new position to support engagement activities. We are also submitting a LOI for a PCORI Engagement award to support regional engagement activities.
UNMC is an active participant in the ADAPTABLE study and led the GPC participation in the Bariatric trial with Dr. McClay as the GPC PI and Dr. McBride serving as scientific lead. UNMC is also active in PROVIDE-HF, the Cancer Rapid Cycle Research study (UNMC is responsible for Aim 2), the Pathways to Diagnosis (PCORI application 12/16; University of Pennsylvania/Vasculitis PPRN) study and NEXT-D (CAPriCORN).
Based on input from ADAPTABLE partner sites, the UNMC team piloted local changes to research recruitment processes. Innovative solutions include establishing formal pipelines for patient recruitment through our health system’s EHR patient portal and through a central research email system. In collaboration with our GP-CTR, we are bringing a research participant call center online to increase recruitment for ADAPTABLE and PROVIDE-HF. We are expanding researcher involvement by providing educational materials describing the use of these newly developed tools and methods whereby we highlight participation in PCORnet trials. Research opportunities are then easily communicated to this network of engaged researchers.
Each PCORnet research opportunity is initially assessed by the GPC CDRN Research opportunity assessment committee (ROA). A summary of the opportunity is then passed the the UNMC ROA who identifies likely research teams. We then directly contact research groups in relevant departments. Participation in PCORnet underlies recent UNMC Big Data to Knowlege funding award to integrate Genomic and biomarker data into the CDW.
The UNMC team publishes ETL scripts for populating the CDM to the EPIC EHR community through the EPIC UserWeb. This provides a collaborative mechanism that does not violate contract agreements between UNMC and the associated health system. We identified a gap in historic NDC codes available in the National Library of Medicine RxNORM API. Our team worked with the NLM to retrieve historic NDC codes, map to RxNorm and make available the new “getAllHistoricNDCs” API from RxNAV. UNMC provides expertise to the Cancer CRG rapid cycle research project encoding findings from pathology and piloting the CDM V4 Med Admin table to capture chemotherapy infusions. Workign with the GPC and SCILHS network, the UNMC Inforatics team expanded the i2b2 SCILHS metadata model in support of federated research queries. UNMC also collaborated with the state health information exchange to expand encounter data available in the CDW.
The UNMC Clinical Research Analysis Environments contains over a billion observations on 1.5 million patients seen by providers at our health system partner, Nebraska Medicine. Data sources include 1) EPIC patient recordsfrom 2 hospitals and over 40 clinics across the region; 2) UNMC Cancer Registry; 3) Biospecimen repositories; 4) REDCap (patient reported outcomes); 5) Social Security Death Index; 6) NeHii, the Nebraska Statewide Health information Exchange; 7) Surescripts medication dispensing records.
Our architecture is shared across the GPC CDRN with close through the GPC-DEV ticketing system and weekly conference calls. Our CDM contents are reflected in the recent (report). All queries All data fields are populated. UNMC operates the Nebaska Lexicon, an internationally recognized name- space for vocabulary development and linkage in SNOMED, LOINC and RxNorm. Dr. McClay is a chair at HL7 International developing standards for data representation and linkage. UNMC leads an international consortium publishing standards for linking genomic data to EHR data through SNOMED modeling.