Big Health Data Sharing: Benefits, Challenges and Solutions


BIOtech Now
BIOtechNOW Editor

Data is King! We all agree that sharing genomic and other health data is instrumental to enable the next wave of scientific advancements which ultimately translate to better diagnoses, treatment options, and overall well-being for patients around the globe. Yet, there are many hurdles we still have to overcome when it comes to generating, sharing, securing, and extracting knowledge from big healthcare data. These include, but are not limited to, accumulating the right amount and kind of data to understand the underpinnings of cancer or specific rare diseases, making sense of big health data, and creating solutions that allow sharing of sensitive patient data in a secure and standardized way to maximize the potential benefits for scientific and medical insights.

A lot is happening and for good reasons:
Big Data initiatives are ongoing. Many of the current major health initiatives build on the principles of effective data generation and sharing, whether we think of the 100K Genomics England Project, the Precision Medicine Initiative (All of Us), the Cancer Moonshot, or the Million Veterans Program. The benefits are clear: the more data, the better we will understand the molecular details including the genetics of different diseases.

Creating standards: The Global Alliance for Genomics and Healthis taking steps to standardize and enable secure sharing of genomic and clinical data, by forming a data working group that includes research, health care, and disease advocacy organizations.

State of affairs:
Data sharing cannot happen without addressing the need for data security and privacy. A recent survey, summarized in PLOS Biology, highlights data privacy and security as major concerns when it comes to sharing genomic and other data, especially across international borders. Considering the increasing dependence of breakthrough biomedical research on having access to big data sets collected and shared across labs and institutions, it is paramount to invest in and consolidate secure data sharing as a prerequisite for modern healthcare and precision medicine.

  • We need data to make sense of data.
  • We are missing easy-to-use solutions to share patient data.
  • We have to overcome complicated US and European privacy laws for successful data sharing.

At PMWC 2017:
Over the years we have seen many academic, commercial, and government led efforts that directly or indirectly address big data availability and security to enable biomedical research and clinical utility. This is echoed in the Precision Medicine World Conference PMWC 2017 Silicon Valley program with several specific sessions addressing the many facets of this topic. Among the session highlights are:

  • Biobanking Your Future: The importance of biobanking for personalized medicine. This session touches upon infrastructure requirements, data access policies, and other primary concerns associated with the management of a biobank. With Dr. Nazneen Aziz, Executive Director Kaiser Permanente Research Bank as session chair.
  • The Value of Data Sharing: Addressing the challenges of creating a universal approach to data sharing efforts and what it will take to create a universal movement that will benefit all stakeholders with Brady Davis, Sr. Director of Strategy at Illumina.
  • Data Sharing: Patient Rights and Privacy: Turning patients into partners and provide an incentive for even broader data sharing. With Dr. William Knox Carey, VP Healthcare Initiatives, Intertrust Technologies Corporation as session chair.
  • Generating Insights from Multi-modal Healthcare Data for Precision Medicine: The challenges and bottlenecks to overcome that are associated with the data generation and aggregation process. With Dr. Atul Butte, Director, Institute for Computation Health Sciences, UCSF.
  • Genetic Testing in Healthy Population: Comprehensive genetic testing as part of health and prevention programs based on personal utility. With Dr. Randy Scott, CEO, Invitae Corporation as session chair.
  • Large Scale Human Genetics in Genomic Medicine and Drug Discovery: Leaders of large-scale human genetics programs share their experiences and perspectives on the biggest successes, challenges and overall potential for the future of human genetics in transforming science to medicine. With Dr. Aris Baras as session chair.
  • Learning from Precision Medicine Centers: We are facing many challenges when integrating enabling-technology platforms to achieve throughput goals, build biological repositories, and analyze data. With Dr. Berta Strulovici, The Israel National Center for Personalized Medicine, Weizmann Institute, Israel as the session chair.

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