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Survey identifies perceived barriers to data sharing
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CHICAGO — Perceived barriers to effective data sharing include funding, informatics systems, clinical data capture and European data protection legislation, according to survey results presented at the ASCO Annual Meeting.
The survey, conducted by the Global Alliance for Genomics and Health, attempted to define potential limitations of data sharing as a means to promote the collection and effective distribution of clinical outcome data in a legal and ethical manner, as well as to maximize clinicogenomic data for optimal patient care.
“With the increasing accessibility and falling costs of next-generation sequencing, we are in an age of unprecedented generation of human cancer data,” Jeremy Howard Lewin, MBBS, FRACP, of Princess Margaret Cancer Centre in Toronto, said during a presentation. “The critical point is now being reached in which the analysis and storage of annotated information in unconnected silos will store the advancement of cancer care.”
The Global Alliance for Genomics and Health was founded to promote the responsible and effective sharing of clinical and genomic data.
“There is a lack of collective intelligence on global current practices in cancer sequencing initiatives worldwide,” Lewin said. “Initiatives now have the potential to generate petabytes of data, but there is a paucity of information on the type of technical platforms being employed, the choice of bioinformatics algorithms, the processes for collecting matched clinicogenomic outcome data and the potential barriers that need to be overcome in order to promote a sharing culture.”
The group invited 107 international cancer sequencing initiatives to participate in a survey designed to catalog global activity and dissect perceived barriers to data sharing.
The survey consisted of 97 questions designed to gain information on baseline demographics, clinical data collection, the nature of genomic platforms employed, privacy and ethical concerns, sources of funding, and perceived barriers to data sharing.
Invited institutions ranked potential barriers using Likert scales, with scores ranging from 1 (minor barrier) to 6 (major barrier).
Fifty-nine initiatives responded, representing 55% of invited institutions. The researchers assumed consent based on survey return.
Sixty-one percent were located in North America or Europe. The researchers reported a fairly equal distribution between annual number of samples analyzed (1-1,000 per year, 49%; > 1,000, 51%), and between diagnostic and research intent (diagnostic, 15%; research, 37%; both, 34%; unknown, 14%).
The researchers categorized the greatest perceived barriers to data sharing (Likert scales 4) into two categories (A and B).
Barriers in the A category included lack of funding (75%), incompatible data systems (69%) and insufficient clinical data capture (58%).
The B category included lack of informatics expertise (49%), legal issues (36%) and privacy issues (34%; A vs. B, P < .001).
Informatics barriers did not differ based on initiative size or intent, but larger initiatives reported a greater difficulty in capturing clinical data (P < .001).
Financial barriers did not differ based on size or intent. European initiatives reported more apparent legislative barriers on data protection (P = .04).
These study findings are a “snapshot of a very quickly evolving field,” and results are likely to change significantly over time, Lewin said. Further many geographic locations, including China and India, were not included in the analysis.
“There is no uniform process for collecting data for precision medicine application, and there is significant heterogeneity in the implementation of genomic platforms,” Lewin said. “We are actively leading harmonization efforts to advance genomic and clinical data sharing in order to improve human health.” – by Cameron Kelsall
Reference:
Lewin J, et al. Abstract 11502. Presented at: ASCO Annual Meeting; June 3-7, 2016; Chicago.
Disclosure: Lewin reports no relevant financial disclosures. Please see the abstract for a list of all other researchers’ relevant financial disclosures.