Survey Highlights Barriers to Global Data Sharing

Funding, informatics system, clinical data capture, and European data protection legislation were considered the greatest barriers to effective data sharing.
Funding, informatics system, clinical data capture, and European data protection legislation were considered the greatest barriers to effective data sharing.

CHICAGO — Funding, informatics system, clinical data capture, and European data protection legislation were considered the greatest barriers to effective data sharing, according to survey findings from the Global Alliance for Genomics and Health (GA4GH).1

"There has been an unparalleled generation of human genetic data," said Jeremy Lewin, MBBS, FRACP, of Princess Margaret Cancer Centre in Toronto, Ontario. "In a way, that allows data to be shared on a global level, but how do we unlock its potential?"

GA4GH is a non-profit organization that seeks to accelerate progress in human health by harmonizing data generation and reporting, creating a framework for responsible  data sharing, defining standard lexicon, and catalyzing data sharing projects. To identify hurdles for effective data sharing, the GA4GH conducted a survey of 107 international cancer-sequencing initiatives.

The survey was a multi-item questionnaire consisting of 97 questions and was designed to assess 6 domains of cancer genomic sequencing initiatives: baseline demographics, clinical data collection, nature of genomic platforms, privacy and ethical concerns, funding sources, and perceived barriers to data sharing.

In total, 59 initiatives, which were mostly located in North America or Europe, responded to the Web-based survey using Google Forms.

The vast majority completed the entire set of 97 questions, though as not all questions were mandatory, the response rate varied per question," Mr Lewin added.

Results showed that the biggest perceived barriers to effective data sharing were lack of funding, incompatible data systems, and insufficient data capture.

"Larger initiatives indicated they had greater difficulty capturing clinical data," Mr Lewin noted. "Data protection legislation barriers were more apparent in European initiatives."

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In contrast, informatics and financial barriers neither differed among the sizes of initiatives nor among those with different intents (diagnosis vs research).

As of now there is no uniform approach to data collection for precision medicine, since there is significant heterogeneity in the implementation of genomic platforms, and there are no standardized procedures for clinical data capture, efficacy assessments, and ethical procedures.                                   

Reference

  1. Lewin JH, Vis DJ, Voest EE, Liao R, Nederlof PM, Conley BA, et al. Determining barriers to effective data sharing in cancer genomic sequencing initiatives: A Global Alliance for Genomics and Health (GA4GH) survey. J Clin Oncol. 2016; 34 (suppl; abstr 11502).
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