HealthData & Privacy: When to go above & beyond with consent
Cristian L.
Building towards an AI enabled future that is driven by data, technology, and measurable outcomes
The Wall Street Journal reported today that "Google’s Secret ‘Project Nightingale’ Gathers Personal Health Data on Millions of Americans." While technically legal under HIPAA and federal law, you can't help but feel a bit "icky" when a company is ingesting vast stores of your health information without your consent or knowledge.
When I worked with the US Department of Health and Human Services, I recall being reminded by my deputy assistant secretary to ask myself whether I would be proud to see my work appear "above the fold." That is, above the fold of the newspaper, in his case, the Washington Post, the New York Times, or the Wall Street Journal. If I wasn't, I should rethink what I was doing and figure out why I felt that way. It served as a good check as we were developing HealthData.gov, making sure that the information that we were planning on making public couldn't be used to identify individuals and be used to adversely target Americans.
Data privacy and ownership is of paramount concern to individuals. It's becoming more clear that our individual data underpins much of business today (think - consumer marketing, sales, etc.). Health data, with deeply personal impact on our well-being, is as important as consumer information. As a result, technology companies are better served by over-rotating on data ownership issues by taking the initiative to get a form of informed consent from the patients and doctors whose information they are ingesting and analyzing.
I believe in a future where artificial intelligence and machine learning can be applied to our data to ensure that we live healthier and longer lives. In fact, Google & other technology companies' partnerships with healthcare organizations is a great step in being able to understand the human condition. Ensuring that we keep ethics and privacy concerns at the forefront of the work, rather than the back, will save the industry from running into issues like these in the future.
Long story short, it's equally important to inform the patients & doctors, get their consent, and do the analysis to ensure that the best care is delivered to the right patients in the most efficient manner. After all, isn't that what we're all fighting for?
Passionate about accelerating the re-engineering and digital transformation of U.S and Global healthcare to achieve the Quintuple Aim - Health Equity, Outcomes and the Economy
5 年Classical case of the double edge sword of all new exponential technological advancements that must be properly kept within ethical, moral and legal boundaries. Especially given the game changing moon shot possibilities harnessing the exponential rate of advancements toward achieving the quadruple aim in U.S. and global healthcare. I look forward to following your work and your colleagues at the BCG.?
Dermatology & Dermatology Mobile Apps
5 年The Hidden Trade in Our Medical Data: Why We Should Worry - Scientific American https://www.scientificamerican.com/article/the-hidden-trade-in-our-medical-data-why-we-should-worry/
Nature Regeneration to meet IPCC goals | ex - VC | ex - BCG | PhD Environmental Policy
5 年Cristian L., I’d love to hear your thoughts on the future you allude to where tech companies partner with healthcare providers to provide deeper analytics and suggestions to patients to help them live longer. I hate how difficult it is for me to even access my own simple data like lab results and vaccination history from the doctors I’ve used when moving all over the globe the past few years. If it was with a big tech company and I got some benefit from it, i think I’d give up my data privacy very quickly and feel good about it!
Chief Executive Officer
5 年Thanks Cristian L. for the article... The "trading" of patient information using the backdoor channels is a scary proposition. Patients should have the right to opt in (not to opt out) the default should be opt out. If there is 'a lot of good' go the extra mile and obtain permission from the patients.
Dermatology & Dermatology Mobile Apps
5 年Not news. Hundreds of companies aggregate, buy and sell trade personal health and medical data daily on the $Billion healthcare data bourse. Physicians who donate this data and patients get no Financial or clinical return.