Working Groups

Data Harmonization

Chair: Daniella Meeker
Project Manager: Tara Knight

Members:

• Robert Follett
• Fern FitzHenry
• Lisa Schilling
• Don Torok
• Mark Khayter

The Data Harmonization Working Group meets actively (currently 3 times/month) and includes at least one person from each data site, along with Don Torok and Mark Khayter (ETL contractors). The working group also has individuals in attendance that coordinate with other initiatives in efforts to avoid redundancy. For example, Dr. Lisa Schilling has been coordinating with NYC-CDRN and other OMOP-PCORnet® sites, while Rob Follett has been coordinating with UC ReX and the NCATS ACT.  The objective of the Data Harmonization group has been to ensure that we take the most efficient approach possible to data harmonization.  This involves the development of shared procedures for consulting local subject matter experts, comparing notes on decisions about how to map source data elements into target fields, sharing mappings between terminologies, as well as conducting analysis of data quality. 

Technical and Analytics

Chair: Michael Matheny
Project Managers: Freneka Minter; Tara Knight

The Technical and Analytics Working Group works in developing both horizontally and vertically partitioned distributed analysis methods and tools in order to conduct comparative effectiveness and surveillance analyses on large observational cohort data.  This includes developing adaptations to the PopMed Net data client adapter, developing user interfaces, and supporting clinical trials and observational trials within the CDRN Network.  This working group is also involved with privacy-preserving algorithm development and evaluation as well as de-duplication and re-identification of patients across multiple data sources.  This WG provides guidance and recommendations for analytics  and technical infrastructure for CDRN activities.

Governance Streamlining and Coordination

Chair: Carl Stepnowsky
Project Manager: Barbara Filkins

Members: 

• Mark Elson
• Kate Marie
• Lisa Schilling
• Jason Doctor

The Governance Streamlining and Coordination (GSC) Working Group is an advisory group that will develop a charter and a governance plan for pSCANNER Phase II. The group will develop, harmonize, and provide recommendations on the implementation of governance policies and procedures. The GSC Working Group will ensure that pSCANNER policies are consistent with PCORnet policies. Where PCORnet® policies are in development, the working group will seek to provide input; where PCORnet policies are not developed, the working group will develop policies specifically for pSCANNER. Additional goals include ensuring appropriate data use, implementing an efficient study request and approval process, and balancing the governance needs of pSCANNER and its participating sites. The working group will identify existing governance activities and gaps, recommend priority focus areas, and establish supporting stakeholder relationships.

Patient Engagement and PPRN

Chair: Katherine Kim
Project Manager: Kate Marie

In Phase I the Patient Engagement and PPRN Working Group was formed to develop the administrative and logistical processes for engaging patients and clinicians in the network governance.  In Phase II the working group will address opportunities for patients and clinicians to participate in research, how research data are used, and the value of taking part in research. 

Sustainability and Contracting

Chair: Jason Doctor
Project Manager: Tara Knight

Members: 

• Michael Matheny
• Katherine Kim
• Michael Aratow
• Kari Stephens
• Spencer Soohoo

The Sustainability and Contracting Working Group is charged with developing a viable business model for sustainability of pSCANNER.  Initially, this group will involve a core group of pSCANNER site PIs who can best assess site-specific costs and needs to determine our sustainability goals and work toward a viable approach.  We will then open up the group to additional members interested in contributing to our proposed approach.

Natural Language Processing

Chair: Chun-Nan Hsu
Project Manager: Ramana Seerapu

Members: 

• Scott Duvall
• Olga Patterson
• Hua Xu
• Michael Matheny
• Glenn Gobbel
• Tsung-Ting Kuo

The goal of the working group is to extract phenotypes for three clinical conditions: Kawasaki Disease (KD), Weight Management / Obesity (WM/O), and Congestive Heart Failure (CHF), from tens of millions of clinical notes shared by participating institutes in pSCANNER, and seamlessly integrate with the shared structured data. The working group builds on top the privacy preserving and secured data sharing infrastructure of pSCANNER to create generalizable and scalable NLP tools that are platform independent for ease of sharing and are specialized for increased performance across participating institutions. The current NLP capabilities developed by this working group can be found here.