Data Sharing of Imaging in an Evolving Health Care World: Report of the ACR Data Sharing Workgroup, Part 1: Data Ethics of Privacy, Consent, and Anonymization

Juan Carlos Batlle; Keith Dreyer; Bibb Allen; Tessa Cook; Christopher J Roth; Andrea Borondy Kitts; Raym Geis; Carol C Wu; Matt P Lungren; Jay Patti; Adam Prater; Daniel Rubin; Safwan Halabi; Mike Tilkin; Tom Hoffman; Laura Coombs; Christoph Wald

doi:10.1016/j.jacr.2021.07.014

Data Sharing of Imaging in an Evolving Health Care World: Report of the ACR Data Sharing Workgroup, Part 1: Data Ethics of Privacy, Consent, and Anonymization

J Am Coll Radiol. 2021 Dec;18(12):1646-1654. doi: 10.1016/j.jacr.2021.07.014. Epub 2021 Oct 2.

Authors

Juan Carlos Batlle¹, Keith Dreyer², Bibb Allen³, Tessa Cook⁴, Christopher J Roth⁵, Andrea Borondy Kitts⁶, Raym Geis⁷, Carol C Wu⁸, Matt P Lungren⁹, Jay Patti¹⁰, Adam Prater¹¹, Daniel Rubin⁹, Safwan Halabi⁹, Mike Tilkin¹², Tom Hoffman¹³, Laura Coombs¹⁴, Christoph Wald¹⁵

Affiliations

¹ Chief of Radiology, Doctors Hospital, Coral Gables, Florida; and Associate Professor, Chief of Thoracic Imaging, Baptist Health South Florida, Coral Gables Florida. Electronic address: Juan.batlle@alumni.duke.edu.
² Chief Data Science Officer, Massachusetts General Hospital, Boston, Massachusetts; Chief Imaging Information Officer, Massachusetts General Brigham, Boston, Massachusetts; Associate Professor, Department of Radiology and Chief Science Officer, Harvard Medical School, Boston, Massachusetts; and ACR Data Science Institute.
³ Birmingham Radiological Group, Birmingham, Alabama; and Chief Medical Officer, ACR Data Science Institute.
⁴ Assistant Professor and Chief, 3-D and Advanced Imaging, Department of Radiology, and Director, Center for Practice Transformation, University of Pennsylvania Hospital, Philadelphia, Pennsylvania.
⁵ Chair, SIIM Program Committee; Chair, HIMSS-SIIM; Enterprise Imaging Community; Chair, ACR Informatics Commission; Chair, IHE Radiology (RSNA); RSNA Annual Meeting Program Planning Committee, Chair, Informatics Subcommittee; RSNA Informatics Committee; and Duke University School of Medicine, Durham, North Carolina.
⁶ Lung Cancer and Patient Advocate; Chief Operating Officer, Prosumer Health; Board Member, Rescue Lung Society; and Associate Editor, JACR.
⁷ National Jewish Health and University of Colorado, Denver, Colorado.
⁸ Professor and Deputy Chair (ad interim), Thoracic Imaging Department, University of Texas MD Anderson Cancer Center, Houston, Texas.
⁹ Co-Director, Stanford Center for Artificial Intelligence in Medicine; and Imaging Associate Professor, Stanford University School of Medicine, Palo Alto, California.
¹⁰ Novant Health Winston-Salem, North Carolina; and Chief Radiology Informatics Officer, Mecklenburg Radiology Associates, Charlotte, North Carolina.
¹¹ Emory University School of Medicine, Atlanta, Georgia; and Director, Imaging Informatics, Grady Memorial Hospital, Atlanta, Georgia.
¹² Director, Biomedical Informatics, Stanford Cancer Institute, Stanford, California; Director, Scholarly Concentration in Informatics and Data Driven Medicine, Stanford University, Stanford, California; and CIO and EVP, American College of Radiology, Reston, Virginia.
¹³ Vice-President, Legal, American College of Radiology, Reston, Virginia.
¹⁴ Vice-President, Senior Director, Data Science and Informatics, American College of Radiology, Reston, Virginia.
¹⁵ Chair, Radiology and Chair, Robert E. Wise Institute at Lahey Hospital & Medical Center, Burlington, Massachusetts; and Chair, Commission on Informatics, ACR Professor of Radiology, Tufts University Medical School, Boston, Massachusetts.

PMID: 34607754
DOI: 10.1016/j.jacr.2021.07.014

Abstract

Radiology is at the forefront of the artificial intelligence transformation of health care across multiple areas, from patient selection to study acquisition to image interpretation. Needing large data sets to develop and train these algorithms, developers enter contractual data sharing agreements involving data derived from health records, usually with postacquisition curation and annotation. In 2019 the ACR convened a Data Sharing Workgroup to develop philosophies around best practices in the sharing of health information. The workgroup identified five broad domains of activity important to collaboration using patient data: privacy, informed consent, standardization of data elements, vendor contracts, and data valuation. This is Part 1 of a Report on the workgroup's efforts in exploring these issues.

Keywords: Anonymization; artificial intelligence; data science; data sharing; informatics.

MeSH terms

Artificial Intelligence*
Delivery of Health Care
Humans
Information Dissemination
Informed Consent
Privacy*