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Important Movement on Data Sharing

February 02, 2015
10:36 am

Recently the Institute of Medicine released a report on sharing clinical trial data.  This report comes at an opportune time, when talk of health information technology, interoperability and big data are at the forefront of health policy conversations.  IOM discusses using data collected in trials to maximize knowledge gained and avoid duplicative trials.  The rationale is that this would create greater efficiency among research, and assist in more quickly determining best practices and improving patient care.  Interestingly, the IOM report was followed last week by an announcement by HHS and the Office of the National Coordinator of Health Information Technology regarding the creation of a new roadmap aimed at creating an interoperable structure for improved data sharing across the entire healthcare system.

The Healthcare Leadership Council has been increasingly involved with its members in discussing the future of data sharing, and how it will have an effect on all stakeholders in healthcare.  A number of HLC members have joined innovative data sharing initiatives.  As mentioned in the Wall Street Journal, a data-sharing website clinicalstudydatarequest.com, launched by GlaxoSmithKline, has been joined by several HLC members- Boehringer Ingelheim, Eli Lilly, Novartis, Sanofi and Takeda Pharmaceuticals.  Researchers can request anonymised data from clinical studies to further their research.

Also highlighted in the Wall Street Journal piece is Johnson & Johnson, which is providing the Yale Open Data Access (YODA) Project with clinical trial data for its medicine, medical devices and diagnostics tools.  Another HLC member, Medtronic, is engaged in the YODA project as well. Medtronic was the first company to contract with YODA, and has a great interest in seeing what fruits open science and transparency will bring.  These collaborations between educational institutions and healthcare companies present tremendous potential for healthcare improvement.

The IOM report also discusses barriers to data sharing, such as infrastructure, technology, workforce and sustainability, which certainly need to be taken into consideration.  Collaboration across the sectors is vital for creating the perfect environment in which to exchange data efficiently and advance medical knowledge.  Precise policies establishing productive and principled frameworks for these collaborations will help unlock the true potential of data analysis to elevate healthcare quality and cost-effectiveness.

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