National Academies Press: OpenBook

Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs (2020)

Chapter: Appendix A: Meetings and Presentations

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Suggested Citation:"Appendix A: Meetings and Presentations." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
×

A

Meetings and Presentations

FIRST COMMITTEE MEETING
Washington, D.C.
February 27-28, 2019

National Library of Medicine (NLM) Interpretation of Study Statement of Task

Patricia Brennan, Director, NLM

NLM Program Organization, Services, Products, Resources, and Current NLM Decision Processes for Preserving/Archiving/Accessing/Deaccessioning Data

Patricia Brennan, Director, NLM

Jim Ostell, Director, National Center for Biotechnology Information (NCBI) at NLM

National Institutes of Health (NIH) Strategic Plan for Data Science

Susan Gregurick, Director, Division of Biomedical Technology, Bioinformatics, and Computational Biology, National Institute of General Medical Sciences and Senior Advisor for the NIH Office of Data Science Strategy

Panel Discussion with Representatives of NLM Leadership

Ivor D’Souza, NLM Chief Information Officer

Kim Pruitt, Acting Chief, Information Engineering Branch at NCBI at NLM

Dina Paltoo, NLM Assistant Director for Policy

SECOND COMMITTEE MEETING
Washington, D.C.
March 12-13, 2019

Cost Management of Big Data: Perspectives from Outside NIH

Jeffrey Spies, Founder, 221B LLC

Anita de Waard, Vice President of Research and Collaborations, Elsevier

Suggested Citation:"Appendix A: Meetings and Presentations." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
×

THIRD COMMITTEE MEETING
Washington, D.C.
May 6-7, 2019

Disruptors in Digital Archiving: Presentation from the U.S. National Archives

Leslie Johnston, Director of Digital Preservation, U.S. National Archives

Disruptors in the Cloud

Vamshidhar Kommineni, Principal Project Manager, Azure Blob Storage, Microsoft

Indicators of Data Management Costs at the European Organization for Nuclear Research

Simone Campana, Deputy Project Leader of the Worldwide Computing Grid

WORKSHOP
Washington, D.C.
July 11-12, 2019

Welcome and Introductory Remarks

David Chu, Institute for Defense Analyses

Tyler Kloefkorn, National Academies

Sammantha Magsino, National Academies

Sponsor Expectations

Patricia Flatley Brennan, NLM

The Burdens and Benefits of “Long Tail” Data Sharing

Adam Ferguson, University of California, San Francisco

Panel Discussion: Researchers’ Perspectives—Managing Risks and Forecasting Costs for Long-Term Data Preservation

Moderator: Margaret Levenstein, University of Michigan

Nuno Bandeira, University of California, San Diego

Jessie Tenenbaum, Duke University and the North Carolina Department of Health and Human Services

Georgia (Gina) Tourassi, Oak Ridge National Laboratory

Robert Williams, University of Tennessee Health Science Center

Panel Discussion: Addressing Data Risks and Their Costs

Moderator: Michelle Meyer, Geisinger

Amy O’Hara, Georgetown University

Brad Malin, Vanderbilt University Medical Center

Trevor Owens, U.S. Library of Congress

Breakout Sessions—Tools and Practices That NLM Could Use to Help Researchers and Funders Better Integrate Risk Management Practices and Considerations into Data Preservation, Archiving, and Accessing Decisions

Data—What’s It Going to Cost, and What’s in It for Me?

Phil Bourne, University of Virginia

Suggested Citation:"Appendix A: Meetings and Presentations." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
×

Precisely Practicing Medicine from 700 Trillion Points of Data

Atul Butte, University of California, San Francisco

Open Discussion—Reflections, Plans for Day 2, Coordination with Study

Alexa McCray, Harvard Medical School

Panel Discussion: Incentives, Mechanisms, and Practices for Improved Awareness of Cost Consequences in Data Decisions

Moderator: Lars Vilhuber, Cornell University

John Chodacki, University of California Curation Center, California Digital Library

Melissa Cragin, San Diego Supercomputer Center

Wendy Nilsen, National Science Foundation

Lucy Ofiesh, Center for Open Science

Breakout Sessions—Methods to Encourage NIH-Funded Researchers to Consider, Update, and Track Lifetime Data Costs

Panel Discussion: Researchers’ Perspectives—Reflections and Next Steps

Moderator: Margaret Levenstein, University of Michigan

Nuno Bandeira, University of California, San Diego

Jessie Tenenbaum, Duke University and the North Carolina Department of Health and Human Services

Georgia (Gina) Tourassi, Oak Ridge National Laboratory

Robert Williams, University of Tennessee Health Science Center

Closing Remarks—Themes and Opportunities

Maryann Martone, University of California, San Diego

FOURTH COMMITTEE MEETING
Washington, D.C.
September 17-18, 2019

No open session presentations were held during this meeting.

FIFTH COMMITTEE MEETING
Washington, D.C.
October 29-30, 2019

No open session presentations were held during this meeting.

Suggested Citation:"Appendix A: Meetings and Presentations." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
×

SITE VISITS

National Center for Microscopy and Imaging Research
La Jolla, California
September 11, 2019

National Center for Microscopy and Imaging Research

Mark Ellisman, Director

Steven Peltier, Deputy Director

Willy Wong, Software Technical Lead

Matthew Madany, Researcher

Sean Penticoff, Information Technology Manager

Matthias Haberl, Postdoctoral Fellow

University of California, San Diego/San Diego Supercomputer Center Advanced Cyber-Infrastructure Development Lab
La Jolla, California
September 12, 2019

UCSD/SDSC Advanced Cyber-Infrastructure Development Lab

Jim Short, San Diego Supercomputer Center

Mike Norman, San Diego Supercomputer Center

Sandeep Chandar, San Diego Supercomputer Center

Brian Balderston, San Diego Supercomputer Center

Christine Kirkpatrick, San Diego Supercomputer Center

David Minor, University of California, San Diego Library

Sibyl Schaefer, University of California, San Diego Library

Jeffrey Burke, San Diego Supercomputer Center and Retired Senior Vice President at Seagate

Scott Kahn, Chief Information Officer at LunaDNA, previously Chief Information Officer at Illumina

National Institutes of Health
Bethesda, Maryland
September 18, 2019

National Institute of Mental Health

Greg Farber, Director of the Office of Technology Development and Coordination

National Institute of Nursing Research

Jessica Gill, Lasker Clinical Research Scholar

National Institute of Allergy and Infectious Diseases

John McGowan, Deputy Director for Science Management

Jill Harper, Director for the Office of Biodefense Research and Surety

National Human Genome Research Institute

Eric Green, Director

Valentina Di Francesco, Lead Program Director, Computational Genomics and Data Science, Division of Genome Sciences

Suggested Citation:"Appendix A: Meetings and Presentations." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
×

Carolyn M. Hutter, Director, Division of Genome Sciences

Ajay Pillai, Program Director, Molecular Libraries Program, Division of Genome Sciences

Shurjo K. Sen, Program Director, Division of Genome Sciences

Ken Wiley, Program Director, Division of Genomic Medicine

Dana-Farber Cancer Institute
Boston, Massachusetts
September 25, 2019

Participants

Eliezer Van Allen

Moritz Kircher

Robert Gray

Laura MacConaill

Clifford Meyer

Daphne Haas-Kogan

Hugo Aerts

Bruce Johnson

Harvard Medical School
Cambridge, Massachusetts
September 25, 2019

Participants

Hosts: Mercè Crosas, David Golan, Caroline Shamu

Faculty

Brent Coull

Chris Harvey

Jason Key

Steve McCarroll

Sean Megason

Jeremy Muhlich

Peter Park

Jon Seidman

Piotr Sliz

Artem Sokolov

Peter Sorger

Yaoyu Wang

Ista Zahn

Libraries

Steve Abrams

Ceilyn Boyd

Julie Goldman

Emily Gustainis

Meghan Kerr

Amber LaFountain

Scott Lapinski

Suggested Citation:"Appendix A: Meetings and Presentations." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
×

Elaine Martin

Stuart Snydman

Amy Van Epps

Suzanne Wones

Research Computing and Information Technology

Paul Edmons

Mason Miranda

Deb Scott

Paul Williams

The Broad Institute of the Massachusetts Institute of Technology and Harvard
Cambridge, Massachusetts
September 26, 2019

Introduction to the Data Science Platform (DSP)

Anthony Philippakis

Patient Facing Platforms

Andrew Zimmer, Jen Lapan

Data Engineering

Kathleen Tibbetts, Kristian Cibulskis

Overview of Terra

Clare Bernard, Kristian Cibulskis

Meeting with Daniel MacArthur

Overview of the Genome Analysis Toolkit

Eric Banks

ML4CVD: Machine Learning for Cardiovascular Disease

Puneet Batra

Security at Broad

David Bernick

Tour of DSP and Agile Overview

Diolinda Vaz

Amazon Web Services
Seattle, Washington
October 23, 2019

Participants

Marcy Collinson

Aaron Friedman

Suggested Citation:"Appendix A: Meetings and Presentations." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
×

Elliot Menschik

Ann Merrihew

Sanjay Padhi

Kam Syed

Institute for Systems Biology
Seattle, Washington
October 24, 2019

Participants

Jim Heath

Nathan Price

Sui Huang

Jennifer Hadlock

Andrew Magis

John Earls

Christian Diener

Allen Institute
Seattle, Washington
October 25, 2019

Brain Science

Michael Hawrylycz

Lydia Ng

Shoaib Mufti

Christof Koch

Carol Thompson

Tyler Mollenkopf

Rob Young

John Phillips

Cell Science

Basu Chaudhuri

Immunology

Paul Meijer

Fred Hutchinson Cancer Research Center
Seattle, Washington
October 25, 2019

Participants

Elizabeth Boyd

David Browdy

Marior Dorer

Rachel Galbraith

Suggested Citation:"Appendix A: Meetings and Presentations." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
×

Jennifer Griffith

Brenda Kostelecky

Elizabeth Masnari

Anders McConachie

Dirk Petersen

Niki Robinson

Bonnie Schae

Matthew Trunnell

Suggested Citation:"Appendix A: Meetings and Presentations." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
×
Page 129
Suggested Citation:"Appendix A: Meetings and Presentations." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
×
Page 130
Suggested Citation:"Appendix A: Meetings and Presentations." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
×
Page 131
Suggested Citation:"Appendix A: Meetings and Presentations." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
×
Page 132
Suggested Citation:"Appendix A: Meetings and Presentations." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
×
Page 133
Suggested Citation:"Appendix A: Meetings and Presentations." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
×
Page 134
Suggested Citation:"Appendix A: Meetings and Presentations." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
×
Page 135
Suggested Citation:"Appendix A: Meetings and Presentations." National Academies of Sciences, Engineering, and Medicine. 2020. Life-Cycle Decisions for Biomedical Data: The Challenge of Forecasting Costs. Washington, DC: The National Academies Press. doi: 10.17226/25639.
×
Page 136
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Biomedical research results in the collection and storage of increasingly large and complex data sets. Preserving those data so that they are discoverable, accessible, and interpretable accelerates scientific discovery and improves health outcomes, but requires that researchers, data curators, and data archivists consider the long-term disposition of data and the costs of preserving, archiving, and promoting access to them.

Life Cycle Decisions for Biomedical Data examines and assesses approaches and considerations for forecasting costs for preserving, archiving, and promoting access to biomedical research data. This report provides a comprehensive conceptual framework for cost-effective decision making that encourages data accessibility and reuse for researchers, data managers, data archivists, data scientists, and institutions that support platforms that enable biomedical research data preservation, discoverability, and use.

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