Three New Perspective Articles on Data Sharing

Posted by • April 28th, 2017

From “Learning What We Didn’t Know — The SPRINT Data Analysis Challenge”

This week, the New England Journal of Medicine released three new Perspective articles highlighting different discussions surrounding the sharing of clinical trial data in medicine.

The first, Bridging the Data-Sharing Divide — Seeing the Devil in the Details, Not the Other Camp, explains how the movement toward sharing data from clinical trials has divided the scientific community, and that the battle lines were evident the recent summit sponsored by NEJM. On one side stood many clinical trialists, whose lifeblood — randomized, controlled trials (RCTs) — may be threatened by data sharing. On the other side stood data scientists — many of them hailing from the genetics community, whose sharing of data markedly accelerated progress in that field.

Whose Data Are They Anyway? Can a Patient Perspective Advance the Data-Sharing Debate? explores the patient perspective on data sharing. Most patients haven’t thought much about data sharing, according to Sara Riggare, an engineer and doctoral student at the Health Informatics Center at Karolinska Institutet in Stockholm, but those who have “find the current system unreasonable. Patients expect that health care professionals and researchers use patient data in the best possible way.” Perhaps, seeing clinical trial data as the property of each patient might simplify the data-sharing discussion.

To better understand the complexities and potential benefits of data sharing, the Journal, with the assistance of the Harvard Medical School Department of Biomedical Informatics, sought to create a practical example of sharing data in the context of clinical trials, which became the SPRINT Data Analysis Challenge. The final article released this week, Learning What We Didn’t Know — The SPRINT Data Analysis Challenge, helps us decide how this contest helped to solve the question of  whether a clinical trial data set could be used by other investigators to produce new findings.

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