I was recently invited to contribute a paper on personal data in the healthcare context to a
journal on the Privacy and Security of Medical Information published by Springer-Nature. The paper, “Trust and ethical data handling in the healthcare context” examines the issues associated with healthcare data in terms of ethics, privacy, and trust, and makes recommendations about what we, as individuals, should ask for and expect from the organisations we entrust with our most sensitive personal data.
It's a topical subject, from an Internet Society perspective, because the Internet appears to offer some attractive solutions to pressing problems that confront people and governments, around the globe.
We live in a time of aging demographics, with increased life expectancy and high expectations of the number and type of ailments that can be successfully treated. This, in turn, raises serious questions about the economics of healthcare, and how it should be funded - with widely differing models in countries with state- or insurance-funded systems, and some hybrids of the two.
In the context of the Internet, the monetisation of personal data is unquestionably one of the strongest economic factors: it funds and drives many of the products and services we are offered. Arguably the Internet, as we know it today, could not exist in its current form without the large-scale collection and monetisaton of personal data.
But are these two forces - the economics of healthcare for an aging demographic on the one hand, and the economics of the personal data ecosystem on the other - destined to collide? And if they do, what are the prospects for personal privacy? What implications would that collision have for us as patients, and for the organisations that process healthcare data?
I hope you’ll read the paper and let us know what you think of the approach we suggest.
I also hope organisations will take to heart the paper’s recommendations - to build ethics into the fabric of their products and services, aim for better privacy outcomes, and build trust with us, their users.
