Announcing new Course - Data Privacy 101: Subtle Art of Breaking Data Silos
Based on learnings from building privacy technologies at CuresDev
TL;DR Course for patient organizations to collect patient data and accelerate treatments without breaking the rules. Click Here to Sign up for the course
After 8 months and interactions with 100+ organizations, I have an important realization: Patient Organizations lack fundamental understanding of Data and Privacy.
Primary goal of patient organizations is to raise money and build treatments. In doing so, they interact with patients and generate valuable patient data such as registries, natural history studies, bio-specimens, or even as simple as a email list. Every piece of data is critical to accelerate treatments, but only if it was collected intentionally and safeguarded properly.
There are two key elements:
Data Strategy: What are you collecting and how (ex: surveys, medical records etc)? How do you plan to use the data? How do you monetize it? How will you get a biotech company to use your data? and many other critical questions
Data Privacy: How to safeguard patients’ interest while achieving your Data Strategy?
To use a driving metaphor, Data Strategy tells you how to reach your destination with turn-by-turn directions. Data Privacy provides the is the rules of the road (speed limit, traffic lights, stop signs). Just having a car and driving as fast as you can towards your destination will definitely not end well.
It is important to have a solid fundamental understanding of Data Privacy to ensure your efforts will be successful. Unfortunately, Data Privacy tends to be an after-thought. In many cases, the very thought is out-sourced to institutions such as Ethics Committees (IRBs), Lawyers, Registry platforms etc.
This course will give you a simple and actionable cheatsheet to understand privacy laws, implement data protection systems and share data with researchers in a compliant manner.