Hi! I’m in the process of requesting data from LexisNexis to see how aggregators use consumer health data in their products without consent. The process for request is super easy and free:
I’m specifically wondering if anyone would like to try this with me and compare results we get. The goal here is to figure out if we get a transparent dataset when requesting health information, knowing that products like this exist:
The more we’re able to gather how tech platforms allow 3rd parties to harvest health info, the more we can protect ourselves so that research is done ethically with consent. LMK if anyone wants to explore this project with me!
This is an interesting idea! There’s two potential facets to this idea – a self research project for yourself, and a potential group activity.
What sort of data do you expect to get from LexisNexis?
My expectation is that it’d be somewhat generic personal data aggregation? But I think that stuff is also really interesting – it’s a sort of project I think Paul-Olivier Dehaye might be interested in. Maybe once we can reach out to him once we see what the data looks like.
I’d be happy to explore this project with you! I’ve gone ahead and requested a report for myself with PII masked (I’m guessing that’s what we’d want in a group project?)
Let me know if we should move this topic to the “group activities” section? And I’m happy to show you how to set up a group activity in Open Humans. A first thing to think about (for group activities) is the data management/governance for the group’s data.
One cool thing we might be able to do with collective data is create personal visualizations (via our notebooks) relative to aggregate data.
@gedankenstuecke pointed me to this thread when I made him an unplanned visit yesterday (long story).
Indeed, I would be interested in this, or more largely the community around PersonalData . IO would be interested in such efforts.
Otherwise yes, it does sound like a good group activity to do (beyond the word, I don’t fully understand yet how that works on OpenHumans).
One of our volunteers is curating the CCPA data brokers list, to make it more easily usable by projects such as yours. I will point him to here.
For your goals (understanding interface between consumer and health profiling), it might also make sense to look at insurance comparison sites or similar (think of your favorite and request your data under CCPA if you are a California resident). I would also recommend looking at IQVIA (formerly IMS Health, Quintiles), which tend to be one of the biggest players at this interface. In all those cases, consider also your rights for more information about the transfers of information themselves. They are likely to be the most interesting information in pointing you towards the few places that actually hold a ton of data.
Finally, you might be able to find some answers more directly in the book Networks of Control by Wolfie Christl (can’t link because only allowed two links in a post for new users).
I submitted a request and apparently they are sending me something in THE MAIL in 2 weeks
I think it’d be super interesting to request data from IQVIA and Lexis Nexis, and compare whether the data provided in US vs. California vs. GDPR citizens is different? I’m also very interested to learn if the data gathered provides health information.
Oops, I’m pretty sure I missed a form submission error last time. Submitted it again & saw a confirmation page. Still no confirmation email, which indicates the form is very non-automated (probably just going to an email inbox). I’m almost certain there won’t be any health data in this, but happy to see & share what it looks like – or even if it arrives.
I’ve gone ahead and requested a report for myself with PII masked (I’m guessing that’s what we’d want in a group project?)
A first thing to think about (for group activities) is the data management/governance for the group’s data.
