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 fai...
Using digital technology to share patient-generated health data has the potential to improve the sel...
Published onlineJournal ArticleThe field of human genomics has led advances in the sharing of data w...
BACKGROUND: In the current information age, the use of data has become essential for decision making...
The COVID-19 pandemic has spotlighted the importance of high-quality data for empirical health resea...
Introduction: Within the field of data sharing, discussions surrounding privacy concerns and big dat...
Introduction:; Health research is gradually embracing a more collectivist approach, fueled by a new ...
This study identifies and explores evolving concepts of trust and privacy in the context of user-gen...
AbstractData sharing is increasingly becoming an essential component of clinical practice and biomed...
Epidemiologists and public health researchers are moving very slowly in the data sharing revolution,...
Background Governments, funding bodies, institutions, and publishers have developed a number of stra...
Background Health data-driven activities have become central in diverse fields (rese...
Background Health data-driven activities have become central in diverse fields (research, AI develop...
Objective: Understand barriers to the use of personal health data (PHD) in research from the perspec...
Healthcare partnerships with third-party commercial companies have been met with reservations from t...
Background: Evidence suggests that healthcare data sharing may strengthen care coordination, improve...
Using digital technology to share patient-generated health data has the potential to improve the sel...
Published onlineJournal ArticleThe field of human genomics has led advances in the sharing of data w...
BACKGROUND: In the current information age, the use of data has become essential for decision making...
The COVID-19 pandemic has spotlighted the importance of high-quality data for empirical health resea...
Introduction: Within the field of data sharing, discussions surrounding privacy concerns and big dat...
Introduction:; Health research is gradually embracing a more collectivist approach, fueled by a new ...
This study identifies and explores evolving concepts of trust and privacy in the context of user-gen...
AbstractData sharing is increasingly becoming an essential component of clinical practice and biomed...
Epidemiologists and public health researchers are moving very slowly in the data sharing revolution,...
Background Governments, funding bodies, institutions, and publishers have developed a number of stra...
Background Health data-driven activities have become central in diverse fields (rese...
Background Health data-driven activities have become central in diverse fields (research, AI develop...
Objective: Understand barriers to the use of personal health data (PHD) in research from the perspec...
Healthcare partnerships with third-party commercial companies have been met with reservations from t...
Background: Evidence suggests that healthcare data sharing may strengthen care coordination, improve...
Using digital technology to share patient-generated health data has the potential to improve the sel...
Published onlineJournal ArticleThe field of human genomics has led advances in the sharing of data w...
BACKGROUND: In the current information age, the use of data has become essential for decision making...