Big data is the next big thing but how does it affect the various aspects of health?
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 Health is 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.
This post was originally written by Tal Behar