"The Data Imperative: In the era of "big data" and oversharing, how is your health data protected and used for research?"
Sharing of data has quickly become the most valuable "currency" in the era of "big data", "artificial intelligence (AI)", "wearables" and "cyber-attacks." Companies are collecting, monitoring and using data for everything from providing personalized shopping lists to highly personalized medical care. Individuals are collecting data on FitBits, Apple Watches, and other "wearable" data collection devices. The promise of such data is perceived as nearly infinite. However, the cost of a health data breach s high--on the order of $14 million per health company (IBM Security), and $13 thousand for the victim (NBC)--and responsibly using and integrating the many sources of health data is a big challenge. At the same time, over 58 million more people were needed for clinical trials last year (clinicaltrials.gov) to investigate the next life-saving treatment or standard-of-care.
How can we better navigate the health data conversation and partner with all stakeholders--"the patient", "the researcher", "the IT professional", regulatory, ethics, family members--to provide better prevention, diagnosis and treatment for everyone to benefit from without risking your privacy? As we demand more from healthcare organizations and our providers to provide "value based" and "evidence based" care, how can we collectively move towards better understanding and transparency of who owns what and how is it being used?
We want your feedback during this informal gathering of people from all backgrounds.