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Data Liquidity Tackles Cancer, Diabetes and MS: An Epic Battle for Global Health

Marcia Kean (Feinstein Kean Healthcare), Kenneth Buetow (Arizona State University), Dave King (Exaptive), Robert McBurney (Accelerated Cure Project for MS)
Precision Medicine Salon H-K

The Data Liquidity Coalition is a collaboration comprised of a wide spectrum of stakeholders in the biomedical community – including providers, payers, patients, researchers and others — who are deeply committed to actualizing a common vision of data liquidity to achieve personalized medicine and the rapid learning healthcare system.

Coalition activities focus on projects in which representatives of two or more biomedical sectors collaborate to provide real solutions to real biomedical problems; for example, by developing data exchange capabilities, disseminating those capabilities, or conducting use cases that illustrate the feasibility of seamless data exchange.

In a model project that makes use of a Next-generation Cyber Capability developed by Arizona State University’s Complex Adaptive Systems initiative, the Coalition is fighting cancer by capturing massive amounts of diverse, disaggregated human cancer genome data and making them actionable at the clinical level on an unprecedented scale. Other Coalition members will participate in diverse roles ranging from software development to mobilizing patient support to providing a common networked platform that functions globally across biomedical sectors.

In September 2013, the cancer genome demo will be up and running as a first instantiation of this infrastructure, and Coalition members will then advance to a larger-scale project encompassing a wide range of molecular, clinical, imaging, biosocial, economic, and other data types for the study of diabetes and obesity on a multi-national scale.

Novel characteristics of this approach – as differentiated from countless biomedical data-sharing initiatives now popping up daily – include:

  • The Coalition’s commitment to involvement of diverse sectors of biomedicine, as well as to freely sharing both technology systems and learnings.
  • The project will utilize open source tools, but it is not about creating software, per se. Rather, it provides a seamlessly integrated whole of hardware, software, and data joined together that can be connected to internal resources inside one single institution, as well as connected to outside resources throughout the biomedical ecosystem.
  • The infrastructure exposes a common information architecture at the interface and permits appropriate capabilities to be choreographed to create solutions to complex projects. This adherence breaks down silos and facilitates data liquidity.
  • A scaleable, replicable infrastructure that can rapidly be applied to diseases beyond the initial models in cancer and diabetes.
Photo of Marcia Kean

Marcia Kean

Feinstein Kean Healthcare

Marcia Kean has 35+ years of strategy and communications experience in the life sciences and healthcare. She has assisted 300+ emerging biopharmaceutical companies, policy organizations and academic centers. She has served on multiple advisory committees in academe and government, and has been a frequent speaker at conferences on personalized medicine and the convergence of genomics and informatics technologies. She leads the Steering Committee for the formation of a data liquidity coalition for data-sharing in the cancer research community.

Kenneth Buetow

Arizona State University

Dr. Buetow is a geneticist, and served as the Director of the Center for Biomedical Informatics and Information Technology within the National Institutes of Health’s National Cancer Institute (NCI). In that capacity, he initiated and oversaw the NCI’s pioneering efforts to connect the global cancer community through community-developed, standards-based, interoperable informatics capabilities that enabled secure exchange and use of biomedical data.

Photo of Dave King

Dave King

Exaptive

David King has been involved in high-tech entrepreneurship since the early 1990s. He has over 15 years’ experience in all aspects of software development, from system architecture to large-scale database design to the psychology of user interfaces and management of Agile development teams. Dave helped to pioneer paperless manufacturing information systems in the electronics industry, then focused on designing extensible software systems for ad hoc visualization and analysis of large-scale multidimensional datasets. In 2011, Dave saw the need for a more modular and cross-disciplinary approach to data science and founded Exaptive, Inc. in order to pursue ways that technology and community can be combined to facilitate innovation. In 2015, his company was named as one of five Cool New Vendors in the life sciences by Gartner and an Innovator of Year by the Journal Record and in 2016 was selected by the Bloor Group as one of the top 10 companies and technologies to watch. Dave holds a BS from MIT in electrical engineering and computer science.

Robert McBurney

Accelerated Cure Project for MS

Robert McBurney joined the Accelerated Cure Project for Multiple Sclerosis as its Chief Executive in mid-2011 because he was compelled by the organization’s novel approach to catalyzing innovation in research towards a cure for MS.

He is a neuroscientist by training and has over 35 years of experience in biomedical research and in the management of research-based biotech companies. During the past 25 years, Robert has either founded or played leading roles in biotech companies in the US and in Europe, including Optimal Medicine, Theragenetics, BG Medicine, Differential Proteomics, CeNeS Pharmaceuticals and Cambridge NeuroScience. Many of those companies have focused on developing treatments for patients suffering from neurological disorders and mental illnesses. Others have developed predictive tests or clinical decision support systems for personalizing treatment and improving outcomes for individual patients.

Prior to joining the biotech industry, Robert held academic positions in medical schools in the United Kingdom and Australia, and research positions at Cambridge University and at the National Institutes of Health.

He currently serves on the Boards of Differential Proteomics, Inc., and Optimal Medicine, Ltd., both companies he co-founded, and is a Trustee of the Franklin W. Olin College of Engineering.

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