In our Big Data Round-Up series, PHEMI’s roving reporter brings you thought-provoking articles, resources, and insights that have caught our eye.
Yaniv Erlich is an Assistant Professor of Computer Science at Columbia University and a Core Member of the New York Genome Center. However, he may be most famous for challenging privacy and security systems, his accomplishments ranging from unlocking bank doors to re-identifying anonymized genomic information.
This May, Erlich spoke at Security He walked the audience through how he re-identified those genomes, how the challenge of privacy affects genomic research, and how to build trust between healthcare scientists and their patients and participants.
Erlich says that when he hears people insist “I want my privacy,” they often mean “I don’t trust you with my data.” The future of big data is not only contingent on developing sophisticated data tools and systems, but it’s also a matter of cultivating the right attitudes towards the treatment and exchange of information. Exploring the issues of data sharing and trust, a recent Forbes article cited a Columbia Business School study that inspected how much consumers trust companies and organizations.
75% of consumers are willing to share their most sensitive, personal information with companies “in exchange for a product or service they value” with an organization they trust. While this study doesn’t explicitly deal with the life sciences, the findings from Columbia Business School are highly transferrable. Building trust, as Elrich’s talk indicates, is paramount in the healthcare industry.
Eventually, it won’t be a question of who’s using big data, but how are they using it? Who lay the right foundation? Who has the right system and the right philosophy? After all, the study shows that consumers are “willing to share their data when they know a company can help them understand and control how their data is used” and the organization can ensure “that the information is kept secure.”
So when it comes to their data, organizations shouldn’t only focus on how to get the most information out of their research. They should also consider whether their data system generates trust, whether it gives their workers secure and easy access to the information they want, and whether it helps facilitate those crucial conversations that give their consumers, clients, and patients confidence in the way the organization handles their most sensitive, personal information.