CoverUS Introduces RESPECT — a People First Approach to Health Data Privacy
CoverUS aims to help people be well by closing financial gaps in healthcare.
We do this by finding opportunities for our members to earn money, and also to save money through their interactions with the medical system and with health and wellness providers. We find these opportunities in part through the personal data that our members opt-in to sharing anonymously, including their health and consumer spending data.
This personal data is extremely sensitive, and we believe that it needs to be treated with utmost care and concern for privacy, security, and ethical risks — both to you and to society at large. Furthermore, whether or not you believe that data should ever be “owned,” we believe that that it should be every individual’s human right to have the power to make informed choices about what is and is not done with data about them.
However, as Apple CEO Tim Cook notes, it often legal and common practice in the medical and consumer finance industries to buy and sell our personal data without our knowledge or consent. The data used for a variety of purposes, such as our health records supporting research on the development of new drugs, and our historical purchase data being used to target us with advertising for products that we have a history of buying. These uses can have value, both to society and to us as individuals, but when the data is used without our knowledge or truly informed consent, we think that is wrong.
Therefore, we are building a sophisticated data governance framework into the core of the CoverUS platform. We call it the CoverUS RESPECT Framework, to acknowledge our belief that personal data needs to be treated not just in a manner that is legal and ethical, but also in a manner that is respectful of every individual’s moral right to make choices about the privacy, sharing and use of their data. Our goal with RESPECT is to give our members the power to make practical nuanced choices about what to share, including when, for how long and with whom – and what to keep completely private.
Designing, building, and implementing a RESPECT framework that actually works in practice is exceedingly complicated legally, ethically, and technologically, but it is fundamental to the fulfillment of our mission, and our entire organization is committed to it.
Thankfully, we’re far from alone in this work. Above and beyond the requisite legal frameworks and precedents (GDPR, HIPAA, FTC rules, Creative Commons, and many more), as we build RESPECT for ethical data usage and sharing, we have the great good fortune to be able to "stand on the shoulders of giants.” There is a broad movement underway to re-imagine the sharing of health data in a more ethical human-centric manner; we are learning from, and wherever possible integrating, seminal data design principles and tools that are being made publicly available by luminaries such as Ann Cavoukian, John Wilbanks, Tim Berners-Lee, Camile Nebeker, Elinor Ostrom, and many more.
While RESPECT is designed primarily to govern the use of data in the CoverUS app and platform, we’re undertaking its development openly and collaboratively, both so that we can benefit from broad input, and also so that we can contribute value back to peer communities that may benefit from our work. To this end, we’re participating in health data standards working groups such as the IEEE PhUSE Blockchain Technology and eConsent Pre-Standards Working Groups as well as other informal working groups.
Noted data journalist and data governance consultant Anouk Ruhaak has joined the CoverUS team to help design the RESPECT schema, and our engineers are busy building the technology necessary to ensure that the CoverUS App provides users with unrivaled privacy controls.
Stay tuned for more updates on RESPECT as it evolves.