Steering Committee Meeting
February 24-25, 2014
Bethesda, MD
Standing left to right: Bev Green, Sarah Duffy, Ed Septimus, Lynn DeBar, Greg Simon, Jerry Jarvik, Clayton Huntley, Laura Dember, Gila Neta, Partap Khalsa, Jerry Suls
Sitting left to right: Michael Lauer, Catherine Meyers, Josephine Briggs, Barry Coller, Rob Califf, Eric Larson, Wendy Weber, Rich Platt, Barbara Wells
Main Purpose
The purpose of this meeting is to celebrate the progress that has been made over the first year; discuss lessons learned; hear updates from the Cores, Working Groups, and Committees; and plan for the implementation phase of UH3s as well as the onboarding of the new UH2s.
Monday, February 24, 2014
Topic: Report on Ethics Supplements
- Collaboratory Coordinating Center: Ethics of Standard-of-Care Research
Presenters: Jeremy Sugarman, MD, MPH, MA, and Kevin Weinfurt, PhD - Decision Autonomy in Pragmatic Clinical Trials: Supplement to the TiME Trial
Presenter: Laura Dember, MD - Ethics Supplement Program Update: Survey to Assess the Ethical Framework of Minimal-Risk Studies (ABATE)
Presenter: Julie Lankiewicz, MPH - Attitudes about the Ethics of Research on Medical Practices (RoMP)
Presenters: David Magnus, PhD, and Ben Wilfond, MD
Discussion led by: Robert Califf, MD, and Jeremy Sugarman, MD, MPH, MA
Topic: PCORnet/CTSA/Collaboratory
- Launching PCORnet, the National Patient-Centered Clinical Research Network
Presenter: Rachael Fleurence, PhD - Opportunities for Cooperation and Synergism between PCORI, NIH Collaboratory, and the CTSA Consortium
Presenter: Gordon Bernard, MD - NCATS: Advancing Translation
Presenter: Elaine Collier, MD
The NIH Collaboratory Distributed Research Network
Presenter: Richard Platt, MD, MSc
Topic: Data Governance/Data Sharing and the Distributed Research Network
- The NIH Health Care Systems Research Collaboratory (Meyers)/NHLBI Data Repository (BioLINCC) (Coady)
Presenters: Catherine Meyers, MD, and Sean Coady, MS - Data Sharing in Research: Challenges and Opportunities - Are We Ready Yet (for the Risks)?
Presenter: Robert Califf, MD - “Table 1”
Presenter: W. Ed Hammond, PhD - Summary of Data Sharing Policy from the Working Group
Presenter: Greg Simon, MD, MPH - UH3 - Data Sets and Data Sharing (ABATE)
Presenter: Ken Kleinman, ScD - LIRE-Data Sharing
Presenter: Jerry Jarvik, MD, MPH - Data Sharing Discussion (TiME)
Presenter: Laura Dember, MD - Collaborative Care for Chronic Pain in Primary Care (PPACT)
Presenter: Lynn DeBar, PhD - Strategies and Opportunities to STOP Colon Cancer in Priority Populations: STOP CRC
Presenter: Gloria Coronado, PhD
Reception and Dinner Presentations
- Collaboration Spaces
Presenter: Asba Tasneem, PhD - Update on the Living Textbook
Presenter: Jonathan McCall, MS
Tuesday, February 25, 2014
Remarks by: Barry Coller, MD, Josephine Briggs, MD, and Robert Califf, MD
Topic: Lessons Learned from Cores/Working Groups
- The NIH Health Care Systems Research Coordinating Center: What Have We Learned and Where Are We Going?
Presenter: Robert Califf, MD - Biostatistics and Study Design Working Group Report
Presenter: Yuliya Lokhnygina, PhD - Phenotype, Data Standards, and Data Quality Core
Presenter: Meredith Zozus, PhD - Patient-Reported Outcomes (PRO) Core Update
Presenter: Kevin Weinfurt, PhD - Stakeholder Engagement Core - Lessons Learned, Update, and Plans
Presenter: Sean Tunis, MD, MSc - The NIH Collaboratory Electronic Health Record (EHR) Core Working Group Report
Presenters: Lesley Curtis, PhD, and Jeffrey Brown, PhD - Ethics and Regulatory Core (Discussion Only)
Discussion led by: Jeremy Sugarman, MD, MPH, MA - Health Care Systems Interactions Working Group: Lessons Learned & Next Steps
Presenter: Eric Larson, MD, MPH
Topic: Lessons Learned from the NIH Collaboratory Trials (Discussion led by Eric Larson, MD, MPH)
- Lessons Learned – ABATE
Presenter: Ed Septimus, MD