Meta Pixel tracker sending appointment scheduling, patient portal information to Facebook–likely to become the Hot Story of next week. A study published jointly by The Markup and STAT examined the patient-facing areas of Newsweek’s 100 leading hospitals’ websites. It found that 33 of them permit the Meta Pixel ad tracker to send sensitive patient information back to Facebook. Ostensibly the reason is to better serve the patient with more tailored information, but what is not disclosed is what else Facebook is doing with the information. At a minimum, the information is the IP address–which HIPAA considers one of 18 identifiers that when linked to other personal information, can constitute data as protected health information.

Ad trackers like the Meta Pixel are used to target website visitors and also to track ads placed on Facebook and Instagram. Developers routinely permit these snippets of code as trackers for better performance and website tracking.

• For 33 hospitals, the Pixel tracker is picking up and sending back to Facebook information from users of the hospital’s online appointment scheduler: the user’s IP, the text of the button, the doctor’s name, and the search term. In testing the sites using a team approach facilitated by a plug-in called Mozilla Rally, the testers found that in several cases, even more identifiable patient information was being sent: first name, last name, email address, phone number, zip code, and city of residence entered into the booking form.
• Seven hospitals have the Pixel deep into another highly sensitive area–the password-protected patient portal. These go by various names, but a popular one is Epic’s MyChart. One surveyor found that for Piedmont Healthcare, the Pixel picked up the patient’s name, the name of their doctor, and the time of their upcoming appointment. For Novant Health, the information was even more detailed: name and dosage of medication in our health record, notes entered about the prescription about allergic reactions, and the button clicked in response to a question about sexual orientation. (Novant has since removed the Pixel.)

None of the hospitals using the Pixel have patient consent forms permitting the transmission of individual patient information, nor business associate agreements (BAAs) that permit this data’s collection.

The reaction of most of these hospitals was interesting. Some immediately removed it without comment. Others maintained that no protected information was sent using Pixel or otherwise defended its use. Houston Methodist was almost alone in providing a detailed response on how they used it, but subsequently removed it.

Facebook maintains that it does not use this information in any identifiable way and that from 2020 it has in place a sensitive health data filtering system and other safeguards. The New York Department of Financial Services, in a separate action monitoring Facebook in this area, questioned the accuracy of the filtering system. Even when the information is ‘encrypted’, it’s easy to break. Internal leaked Facebook documents indicate that engineers on the ad and business product team admitted as late as 2021 that they don’t have “an adequate level of control and explainability over how our systems use data, and thus we can’t confidently make controlled policy changes or external commitments such as ‘we will not use X data for Y purpose.” (quoted from Vice)

The study could not determine whether Facebook used the data to target advertisements, train its recommendation algorithms, or profit in other ways, but the collection alone can be in violation of US regulations. 

On the face of it, it violates patient privacy. But is it a HIPAA violation of protected health information? No expert quoted was willing to say that was 100% true, but a University of Michigan law professor who studies big data and health care said that “I think this is creepy, problematic, and potentially illegal” from the hospitals’ point of view. Some of the hospitals in their comments say that they vetted it. One wonders at this tradeoff.

To this Editor, Meta Pixel’s use in this way walks right up to the line and puts a few toes over.

If this is true of 33 major hospitals, what about the rest of them–smaller and less important than Columbia Presbyterian, Duke, Novant, and UCLA? What all of us have suspected is quite true–social media is collecting data on us and invading our privacy at every turn, and except for exposés like this, 99% of people neither know nor care that their private information is being used.

The Markup is continuing their “Pixel Hunt” series with childrens’ hospitals. A previous article is about Pixels tracking information from crisis pregnancy centers, about as sensitive as you can get. Also HISTalk.