NIH Policy and Ethics of Record Linkage Workshop

Tuesday, June 29, 2021

Registration now open for June 29-30 workshop

UPDATE as of Aug. 13: Recordings are now available from this workshop. Watch Day 1  Watch Day 2

Read the Summary

The National Institutes of Health (NIH) Office of Data Science Strategy (ODSS) and the National Library of Medicine (NLM) will host the NIH Policy and Ethics of Record Linkage Workshop on June 29 from 1 to 4 p.m. EDT and June 30 from 1 to 4:30 p.m. EDT. The goal of this workshop is to examine the benefits and challenges of record linkages for the purpose of biomedical research, specifically considering:

  • Privacy and Security of Record Linkage
  • Participant Perspectives on Record Linkage
  • Ethical Issues Related to Record Linkage

Attendees are invited to observe and listen to presentations and provide thoughts and questions in the Question/Answer box during presentations, panel discussion, and report outs. Breakout group discussions will be invitation only and not viewable to the public; however, the discussions will be summarized during a report out session.

Registration for each day is independent--attendees should register for both days by completing this registration form for each day they would like to attend. 

Register for Each Day

Individuals who need interpreting services and/or other reasonable accommodations to participate in this event should contact the ODSS at datascience@nih.gov or the Federal Relay Service at 800-877-8339. Requests should be made at least three days in advance of the event.

Background

With the onset of COVID-19, the NIH has been exploring the utility of linking research participant data within and across NIH supported data repositories. The impetus for this workshop is to discuss policy considerations and ethical challenges associated with linking data of research participants across NIH resources. Speakers and participants with a variety of technical and professional backgrounds have been invited to provide insights. The workshop will feature an overview of record linkage approaches and a description of use cases and in breakout group discussions, explore privacy and security of record linkage, participant perspectives on record linkage, and ethical issues related to record linkage. The workshop will conclude with an enumeration of additional areas requiring exploration.

Speaker Bios Join the Slack Channel

Agenda

Day One: Tuesday, June 29, 2021
Start Time (EDT)
(minutes)		 Topic Presenter

1:00 PM
(5 minutes)

Opening Remarks

Susan Gregurick, Ph.D.
Associate Director for Data Science and Director of the ODSS, NIH

1:05 PM
(25 minutes)

Overview of the Workshop

Pilar Ossorio, J.D., Ph.D. (Chair)
Professor of Law and Bioethics, University of Wisconsin-Madison Law School

1:30 PM
(45 minutes)

Ongoing NIH Pilots and Considerations of Record Linkage

Alastair Thomson
Chief Information Officer, National Heart, Lung, and Blood Institute, NIH

Sam Michael
Chief Information Officer, National Center for Advancing Translational Sciences, NIH

Lynne Penberthy, M.D., M.P.H.
Associate Director, Surveillance Research Program, National Cancer Institute, NIH

2:15 PM
(10 minutes)

Break

 

2:25 PM
(85 minutes)

Session: Privacy and Security of Record Linkage

 

2:25 PM
(10 minutes)

Introduction

Anthony Solomonides, DPhil
Program Director, Outcomes Research and Biomedical Informatics, NorthShore University Health System

2:35 PM
(45 minutes)

Breakout Group* Discussions

Group 1 Moderator:
Richard Sharp, Ph.D.

Group 2 Moderator:
Anthony Solomonides, DPhil

 

Group 3 Moderator:
Sharon Terry, M.A.

Group 4 Moderator:
Pilar Ossorio, J.D., Ph.D.

3:20 PM
(10 minutes)

Break

 

3:30 PM
(20 minutes)

Report Outs from Each Breakout Group and Discussion

Anthony Solomonides, DPhil (Moderator)
Program Director, Outcomes Research and Biomedical Informatics, NorthShore University Health System

3:50 PM
(10 minutes)

Considerations and Wrap-Up

Patricia Flatley Brennan, RN, Ph.D.
Director, NLM, NIH

4:00 PM

Adjourn

 

*Breakout sessions are by invitation only; general registrants will not be able to view the discussions, but a workshop report will be made available shortly after the workshop is completed​.

 

Day Two: Wednesday, June 30, 2021
Start Time (EDT)
(minutes)		 Topic Presenter

1:00 PM
(5 minutes)

Welcome Back Opening

Susan Gregurick, Ph.D.
Associate Director for Data Science and Director of the ODSS, NIH

1:05 PM
(85 minutes)

Session: Participant Perspectives of Record Linkage

 

1:05 PM
(10 minutes)

Introduction

Sharon Terry, M.A.
President and Chief Executive Officer, Genetic Alliance

1:15 PM
(45 minutes)

Breakout Group* Discussions

Group 1 Moderator:
Richard Sharp, Ph.D.

Group 2 Moderator:
Anthony Solomonides, DPhil

Group 3 Moderator:
Sharon Terry, M.A.

Group 4 Moderator:
Pilar Ossorio, J.D., Ph.D.

2:00 PM
(10 minutes)

Break

 

2:10 PM
(20 minutes)

Report Outs from Each Breakout Group and Discussion

Sharon Terry, M.A. (Moderator)
President and Chief Executive Officer, Genetic Alliance

2:30 PM
(85 minutes)

Session: Ethics of Record Linkage

 

2:30 PM
(10 minutes)

Introduction

Richard Sharp, Ph.D.
Director, Biomedical Ethics Program, Center for Individualized Medicine Bioethics Program and the Clinical and Translational Research Ethics Program, Mayo Clinic

2:40 PM
(45 minutes)

Breakout Group* Discussion

Group 1 Moderator:
Richard Sharp, Ph.D.

Group 2 Moderator:
Anthony Solomonides, DPhil

Group 3 Moderator:
Sharon Terry, M.A.

Group 4 Moderator
Pilar Ossorio, J.D., Ph.D.

3:25 PM
(10 minutes)

Break

 

3:35 PM
(20 minutes)

Report Outs from Breakout Groups and Discussion

Richard Sharp, Ph.D. (Moderator)
Director, Biomedical Ethics Program, Center for Individualized Medicine Bioethics Program and the Clinical and Translational Research Ethics Program, Mayo Clinic

3:55 PM
(30 minutes)

Connecting Main Ideas Panel Discussion

Spero Manson, Ph.D. (Moderator)
Professor of Public Health and Psychiatry, Director of Centers for American Indian and Alaska Native Health, and Associate Dean of Research, Colorado School of Public Health, University of Colorado Denver’s Anschutz Medical Center

Panelists: Sharon Terry, M.A., Richard Sharp, Ph.D., Pilar Ossorio, J.D., Ph.D., Anthony Solomonides, DPhil

4:25 PM
(5 minutes)

Considerations and Wrap-Up

Patricia Flatley Brennan, RN, Ph.D.
Director, NLM, NIH

4:30 PM

Adjourn

 

*Breakout sessions are by invitation only; general registrants will not be able to view the discussions, but a workshop report will be made available shortly after the workshop is completed​.

This page last reviewed on April 6, 2023