The private information of visitors to telehealth websites is being shared with big tech companies without user consent due to the use of tracking code snippets on the websites, according to a recent analysis by The Markup.
The websites of 50 direct-to-consumer telehealth companies were analyzed for the presence of third-party tracking code, 49 of which were found to have tracking code that transmitted the information of visitors to third parties, including Meta/Facebook and Google.
The study follows on from an analysis of the websites of the top 100 hospitals in the United States in the summer, which revealed one-third were using tracking code on their websites that was sending data to third parties without consent, valid HIPAA authorizations, or business associate agreements. In a handful of cases, the tracking code was added behind password-protected patient portals.
The latest study of telehealth websites included sites that collect highly sensitive information from visitors, such as the personal and health information of people suffering from Substance Abuse Disorder (SAD) who are seeking treatment. In many cases, the answers to medical questionnaires were also sent to big tech firms from questions relating to that health conditions, medical histories, and drug use.
The report, jointly published by The Markup and STAT, found that 49 of the 50 sites studied transmitted the URLs that an individual had visited, with 35 sites also transferring personal information such as email addresses, phone numbers, and full names. 19 sites recorded and transmitted when the user-initiated checkout, 13 sites sent the answers to questionnaires to third parties, 11 sites sent data confirming when the user had added an item to their cart (such as a treatment plan), and 9 sites transferred the date the user created the account.
The 13 sites that sent questionnaire data were of particular concern, as the answers were to health questions. That information was sent to a variety of companies, including Meta, Google, TikTok, Bing, Snap, Twitter, LinkedIn, and Pinterest. 25 sites told big tech firms when a user had added an item such as a prescription medication to their cart or checked out with a treatment plan.
All but one of the 50 websites transferred the URLs that a user had visited on the site. The websites provide health and treatment information, so the information detailed on certain pages may be for a specific health complaint. That information is then tied to an individual or a household via an IP address. Amazon Clinic was the only website that did not share website data with third parties.
Potential HIPAA Violations
Healthcare providers are HIPAA-covered entities and disclosures of protected health information are restricted by the HIPAA Privacy Rule. SUD information is also subject to the 45 CFR Part 2 Confidentiality of Substance Use Disorder (SUD) Patient Records regulations. Recently, the HHS’ Office for Civil Rights published guidance for HIPAA-regulated entities that confirmed that the use of third-party tracking code on websites violates HIPAA if that tracking code collects and transfers protected health information (PHI) to third parties unless the third party qualifies as a business associate under HIPAA. In such cases, a HIPAA-compliant business associate agreement is required before the code can be used. If a third party is not a business associate, HIPAA-compliant patient authorizations are required before that code can be used.
HIPAA applies to healthcare providers, health plans, healthcare clearing houses, and business associates of those entities, but many of the telehealth sites studied operate in a gray area, as the websites are not run by HIPAA-regulated entities or SUD treatment providers, therefore the HIPAA and Part2 regulations do not apply, even though the data collected is the same data that would be classed as PHI or SUD records if collected by a covered entity.
The information collected through these websites is passed on to HIPAA-covered entities and entities covered by Part 2, but the websites themselves are intermediaries and are therefore not bound by HIPAA or the Part 2 regulations. For example, one website run by Cerebral Inc. collected HIPAA-covered data but is not a HIPAA-covered entity. The website passes the information to Cerebral Medical Group, P.A., which is a HIPAA-covered entity. The transfer of data to the big tech firms occurred before the transfer to the Cerebral Medical Group, P.A.
WorkIt Health provides healthcare services including SUD treatment. Its website states in its Notice of Privacy Practices (NPP) that, “You are receiving this NPP because you are or intend to receive health care services from a Workit Health Clinic… Each Workit Health Clinic together designates themselves as a single Affiliated Covered Entity (“ACE”) for purposes of compliance with HIPAA.” However, the WorkIt website had trackers from Google, Facebook, Bing, and Twitter, and transferred URLs, personal information, and answers to questionnaires. The Markup contacted WorkIt Health regarding the findings of the study and WorkIt Health removed the tracking technology from its website and initiated an investigation into the privacy breach.
Visitors to These Websites Expect Privacy
Many healthcare organizations add these tracking technologies to their websites with good intentions, as the technology can provide data that can help to improve the user experience on websites and gauge the effectiveness of marketing campaigns, but the extent to which patient information is being shared is not fully understood.
Individuals who visit these websites are unlikely to be aware that any information they provide directly through answers on web forms and medical questionnaires, and indirectly via the sites they visit, is not being kept private and confidential, and that is a big concern. Many of these sites mention HIPAA and Part 2 in their NPPs, yet the extent to which those regulations apply is unclear. The Markup notes that at least 12 of the studied companies state that they are HIPAA compliant, but that does not necessarily mean that the information provided on the site is kept private or is indeed covered by HIPAA at the point it is collected.
The study shows that there is a trade-off when using these websites. Patients get convenience, but it may come at the expense of their privacy. There is a massive gap in HIPAA, which has not been updated to account for changes in how healthcare is being provided, and there are also suggestions of deceptive privacy practices, albeit in many cases unwittingly deceiving visitors about privacy.
“Sensitive health information is being shared, inadvertently, online every day. Hospital websites, online pharmacies, and health information sites, use a variety of applications (site analytics, links to social media, advertising) that collect and share site visitors’ data, including the healthcare terms and medical conditions that the user is searching,” Ian Cohen, CEO of LOKKER told HIPAA Journal. “For example, in LOKKER’s recent research of over 170,000 websites, we identified the Meta Pixel (Facebook) on over 40% of healthcare sites. Similar data was found about data being shared with TikTok, Snapchat, Pinterest, Microsoft, and Google, as well.” Cohen went on to say, “Not only are consumers and patients unaware that their information is being collected and shared, we believe that the website owners don’t fully understand the extent to which they are sharing data back to the social networks.”
The Markup explained that its researchers did not test all webpages on the sites of the telehealth providers, so the full extent to which tracking code has been used is not known. Tracking code can also be configured differently on different web pages.
It is also unclear what the big tech firms do with the transferred data. Several big tech firms state that they do not allow targeted advertising related to health conditions, although there are ways around that by using closely related terms. Meta, for instance, claims to strip out any data it should not receive and does not provide that information to third-party advertisers. The extent to which that occurs is also unclear. Meta is the subject of several lawsuits over this very matter, some of which allege health data has been used to serve targeted ads to patients whose information was collected through the Meta Pixel code snippet.
Steps Operators of Health Websites Should Take
The HHS’ Office for Civil Rights has made clear in its recent guidance that tracking technology on websites violates HIPAA and that this issue needs to be addressed immediately. HIPAA-regulated entities are required to report any HIPAA violations related to the use of third-party tracking technologies. So far, only a few HIPAA-regulated entities have done so, despite huge numbers having added tracking code to their websites. Even if the websites are not run by HIPAA-regulated entities, the operators of those websites have a moral responsibility to protect the privacy of their visitors with respect to their sensitive health information. Ian Cohen suggests all healthcare organizations should take the following actions:
- Take inventory of what data your websites and apps are collecting and if you’re violating your own privacy policy, other privacy laws, or your customers’ trust
- Know your partners and ensure they aren’t exploiting your customers’ information
- Build customer privacy ‘muscle’ by forming teams that include Marketing, IT, and Legal and establish routines for better data hygiene
- Don’t just ask for customer consent for bad practices, re-evaluate how you want to better serve your customers and build trust with every interaction by communicating clearly
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