Aligning Incentives for Sharing Clinical Trial Data
April 3-4, 2017 | #NEJMDataSummit
Monday, April 3: 8:30 am — 3:00 pm (ET)
- Welcome and Opening Remarks and Behind the Curtain: Gathering and Preparing SPRINT Trial Data
- Is the Juice Worth the Squeeze?
- Panel 1: Reproducibility of Findings
- Panel 2: Beyond Reproducibility of Findings
- Panel 3: Aligning Academic Rewards that Work
- SPRINT Data Analysis Challenge and Winners Present
Tuesday, April 4: 8:30 am — 12:00 pm (ET)
- Day 2 Welcome and Panel 1: Repositories: Keepers of Data
- Aligning Incentives: Repositories, Funders and Patients
- Panel 2: Funders: Sponsors of Data
- Panel 3: Patients: Sources of Data
- Reports from the Problem-Solving Sessions: Live Event and Online Groups
- Lessons Learned From Listening and Next Steps
Monday, April 3 | 8:30 am — 3:00 pm (ET)
8:30AM (ET)
Welcome and Opening Remarks and Behind the Curtain: Gathering and Preparing SPRINT Trial Data
Craig Baskin
SPRINT Trial Participant
Sean Coady
Statistician, National Heart, Lung, and Blood Institute (NHLBI)
Jeffrey M. Drazen, Summit Co-Chair
Editor-in-Chief, The New England Journal of Medicine
David Reboussin
Principal Investigator, Data Coordinating Center of SPRINT; Professor, Biostatistical Sciences, Wake Forest University
Brian Strom
Inaugural Chancellor of Rutgers Biomedical and Health Sciences, Executive Vice President for Health Affairs, Rutgers University
Daniel Weiner
Principal Investigator, Boston SPRINT site; Associate Professor of Medicine, Tufts University
10:15AM (ET)
Is the Juice Worth the Squeeze?
The Summit Co-Chairs moderate panel discussions that weigh the effort and value of sharing clinical trial data. Each panel discusses a core theme and features viewpoints from the three key constituencies in data sharing: clinical trialists, data analysts, and patient representatives.
Panel 1: Reproducibility of Findings
Panelists address the core issues of whether clinical trial analyses are reproducible and robust. If they differ, do the differences matter? How should conflicting findings be adjusted?
Paul Costello
SPRINT Trial Participant
PJ Devereaux
Professor, Department of Health Research Methods, Evidence, and Impact, McMaster University
Marc Pfeffer, Summit Co-Chair
Dzau Professor of Medicine, Harvard Medical School
Nigam Shah
Associate Professor of Medicine Biomedical Informatics, Stanford University
Janet Wittes
President, Statistics Collaborative
Panel 2: Beyond Reproducibility of Findings
Panelists discuss the value of further analyses beyond those already addressed by the trial. How to make good and reliable use of others' data? What is the value of the data for trialists, analysts, the public?
Atul Butte
Director of the Institute of Computational Health Sciences, University of California, San Francisco
Rory Collins
Professor of Medicine and Epidemiology, University of Oxford
Isaac Kohane, Summit Co-Chair
Marion V. Nelson Professor of Biomedical Informatics, Harvard Medical School
Sharon Terry
CEO, Genetic Alliance
Panel 3: Aligning Academic Rewards that Work
Clinical trials require effort to accrue and organize data. How do we ensure all involved are adequately recognized and rewarded in a way that retains societal and academic incentives?
Salim Abdool Karim
CAPRISA Professor of Global Health in Epidemiology, Columbia University
Daniel MacArthur
Assistant Professor, Harvard Medical School and Massachusetts General Hospital
John McMurray
Professor of Cardiology, University of Glasgow
Matthew Might, Summit Co-Chair
Department of Biomedical Informatics, Harvard Medical School
Heather Pierce
Senior Director, Science Policy and Regulatory Counsel, Association of American Medical Colleges
1:45PM (ET)
SPRINT Data Analysis Challenge and Winners Present
Insights are shared from the SPRINT Data Analysis Challenge, a practical example of data sharing in today's environment. The SPRINT Challenge winners discuss their novel finding and earn international bragging rights.
Rahul Aggarwal, Second Place Winner in the SPRINT Challenge
Boston University School of Medicine
Ran Balicer, On Behalf of Noa Dagan
Director, Clalit Research Institute
Sanjay Basu, Third Place Winner in the SPRINT Challenge
Stanford University
Noa Dagan, First Place Winner in the SPRINT Challenge
Chief Data Officer and Researcher, Clalit Reseach Institute
Pam Miller
SPRINT Data Analysis Challenge Coordinator, The New England Journal of Medicine
Tuesday, April 4 | 8:30 am — 12:00 pm (ET)
8:30AM (ET)
Day 2 Welcome and Panel 1: Repositories: Keepers of Data
Barbara Bierer
Professor of Medicine, Harvard Medical School
Ewan Birney
Director, European Bioinformatics Institute
Jeffrey M. Drazen, Summit Co-Chair
Editor-in-Chief, The New England Journal of Medicine
Margaret Levenstein
Director, ICPSR, The University of Michigan
Jennifer O’Callaghan
Clinical Data Sharing Manager, Wellcome Trust
8:30AM (ET)
Aligning Incentives: Repositories, Funders and Patients
To broaden the focus to incorporate other key constituencies who play a part in data sharing success, three panel discussions explore the issues from their respective points of view.
Panel 2: Funders: Sponsors of Data
Robert Califf
Professor of Medicine, Duke University
Robert Kiley
Open Research--Development Lead, Wellcome Trust
Michael Lauer
Deputy Director for Extramural Research, National Institutes of Health
Richard Wilder
Associate General Counsel, Gates Foundation
Panel 3: Patients: Sources of Data
Marcia Manong
Clinical Trial Participant
Matthew Might, Summit Co-Chair
Department of Biomedical Informatics, Harvard Medical School
Nancy Nagler
Clinical Trial Participant
Moses Taylor
SPRINT Trial Participant
10:50AM (ET)
Reports from the Problem-Solving Sessions: Live Event and Online Groups
Theme leaders report and discuss the key points raised in Monday's problem-solving working sessions. Panelists discuss their importance and participate in Q&A.
Esteban Burchard
Professor of Medicine, Bioengineering, and Therapeutic Sciences, University of California, San Francisco
Jeffrey M. Drazen, Summit Co-Chair
Editor-in-Chief, The New England Journal of Medicine
Gary H. Gibbons
Director, National Heart Lung and Blood Institute (NHLBI)
Bernard Lo
President, Greenwall Foundation
11:45AM (ET)
Lessons Learned From Listening and Next Steps
Jeffrey M. Drazen, Summit Co-Chair
Editor-in-Chief, The New England Journal of Medicine