Fresh takes on five health data sharing domains: Quality, privacy, equity, incentives, and sustainability

Authors

Christi J Guerrini
Mary A Majumder
Jill O Robinson
Robert Cook-Deegan
Matthew Blank
Juli Bollinger
Janis Geary
Amanda M Gutierrez
Maya Shrikant
Amy L McGuire

Publication Date

1-1-2023

Journal

Frontiers in Big Data

DOI

10.3389/fdata.2023.1095119

PMID

36814524

PMCID

PMC9939819

PubMedCentral® Posted Date

2-6-2023

PubMedCentral® Full Text Version

Post-print

Published Open-Access

yes

Keywords

data sharing, data quality, ethics, data privacy, data archives

Abstract

As entities around the world invest in repositories and other infrastructure to facilitate health data sharing, scalable solutions to data sharing challenges are needed. We conducted semi-structured interviews with 24 experts to explore views on potential issues and policy options related to health data sharing. In this Perspective, we describe and contextualize unconventional insights shared by our interviewees relevant to issues in five domains: data quality, privacy, equity, incentives, and sustainability. These insights question a focus on granular quality metrics for gatekeeping; challenge enthusiasm for maximalist risk disclosure practices; call attention to power dynamics that potentially compromise the patient's voice; encourage faith in the sharing proclivities of new generations of scientists; and endorse accounting for personal disposition in the selection of long-term partners. We consider the merits of each insight with the broad goal of encouraging creative thinking to address data sharing challenges.