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How Online Tracking Technologies & Data Collection Threaten Patient Privacy

Tuesday, October 10th, 2023

Many healthcare marketers use online tracking technologies to gather user information as they interact with a website or mobile application. After several breaches tied to improper uses of third-party tracking pixels, the Department of Health and Human Services has clarified that data collected via online tracking technologies are often PHI and must be secured according to the Privacy Rule. This decision has put many organizations at a crossroads- how can they balance patient privacy with the financial pressures to grow their business and provide a superior digital experience?

online tracking technologies

What are Online Tracking Technologies?

Tracking technologies collect information about website visitors in various ways, many of which are invisible to the user. Some of the most common types of tracking technologies include cookies, web beacons or tracking pixels, session replay scripts, and fingerprinting scripts. Mobile apps also include tracking codes within the application to enable the collection of user information.

After collecting the information, it is analyzed to create insights about users’ online activities. Marketers often use the data to create highly targeted advertising campaigns. In the case of third-party tracking technologies, they may continue to track users and gather information about them even after they leave and visit other websites. You’ve likely experienced this when online shopping. You look at a pair of shoes on a retailer’s website, and then they continue to follow you and appear as ads as you browse other websites and social media platforms. However, if you replace ads about shoes with advertisements for treatments for an individual’s medical conditions, this raises serious patient privacy concerns.

What Does HIPAA Say About Online Tracking Technologies & Data Collection?

Online tracking technologies have been widely utilized for over a decade but have only recently been considered in the context of health data privacy. The Dobbs vs. Jackson Women’s Health Organization decision by the Supreme Court in June 2022 kicked off a wave of reporting on how reproductive health information was collected and sold online. Some worried that this information could be used in court cases to convict people who sought abortions, leading to significant concerns over digital health data privacy.

In this context, researchers began looking at the websites of major health systems to explore how they used trackers to collect and transmit data. A study revealed that 99% of US hospitals employed online data trackers that transmitted visitors’ information to a broad network of outside parties, including major technology companies, data brokers, and private equity firms. Some hospitals even employed these trackers on internal patient portal web pages, potentially exposing highly sensitive patient data to advertisers.

As a result of the confusion surrounding this issue and the seemingly clear violation of HIPAA rules, OCR issued a bulletin explaining how covered entities can and cannot use tracking technologies on their websites.

You would think that is the end of the story. However, there is still a lot of confusion surrounding the proper use of these technologies. In July 2023, the FTC and OCR issued another warning to 130 hospital systems that continued deploying online tracking technologies despite the bulletin.

Gray areas still exist in how the bulletin is interpreted. The American Hospital Association recently asked OCR to reconsider its guidance, stating it contradicts interoperability efforts. As this situation evolves, healthcare providers must be aware of the risks of online tracking technologies and how they can balance risk with their business objectives.

How is this Data Protected Health Information?

One of the reasons this issue flew under the radar for so long is that it is not necessarily obvious that the information collected by these pixels qualifies as PHI. It may not be evident to end-users, but tracking technology vendors can infer a lot of personal data through tracking technologies placed on a healthcare provider’s website. Some of the information that can be captured by tracking technology could include:

  • medical record numbers
  • email addresses
  • appointment dates or requests
  • IP addresses
  • medical device IDs
  • geographic locations

Marketers may not realize that individually identifiable information collected on a covered entity’s website or mobile app is often protected health information (PHI). Even if the individual has no pre-existing relationship with the healthcare provider, DHHS’s recent update is clear that this information is protected. Collecting this information establishes a relationship between a covered entity and an individual relating to their past, present, or future provisioning of health care. A visit to a healthcare provider’s website may be the first step taken by a future patient in accessing healthcare treatment.

There is always some gray area when defining PHI, but it’s better to be safe than sorry in this case. If you are using any online tracking technology, you must confirm that it is processing and transmitting data in a way that aligns with HIPAA regulations.

How Healthcare Marketers Can Protect Patient Privacy

First of all, if you plan to use tracking technology on your website, the vendor needs to be a business associate of your organization. In these circumstances, covered entities must ensure that the disclosures made to such vendors are permitted by the Privacy Rule and enter into a business associate agreement (BAA) that outlines how PHI will be protected.

Think carefully about what data needs to be collected and why. In other industries, collecting user data and selling it to third parties or using it in advertising efforts is very common. Healthcare marketers must be more intentional in using online tracking technologies and take additional steps to ensure the data is processed and transmitted securely. Do not install tracking pixels without careful consideration. As many hospital systems learned, failing to do so can have profound privacy and compliance implications.

If you want to follow up with patients who browsed your website for available appointments, you must ensure their data is secure from when it is collected through the transmission to other systems. For example, a patient may enter their name, email address, phone number, and desired appointment time into an online form. When they click “Submit,” where and how is this data transmitted and stored? As they browse the available appointments and doctors, your system may log which web pages they visit and store them in a CRM, CDP, or another platform. If they leave without making an appointment, what do you do with the data you collect? If you transmit this data to other advertising or marketing platforms, you will also need business associate agreements with those vendors. As you can see, it can get complicated very quickly.

HIPAA-Compliant Marketing Technology

LuxSci’s Secure Form and Secure Marketing technologies offer a few ways to address the patient privacy issues associated with online data collection and transmission. Our fully HIPAA-compliant solutions enable you to securely collect data on your website and use secure email to engage prospects. Contact our sales team to learn more today.

Tags: data collection, email marketing, ePHI, hipaa compliance, online tracking, online tracking technology, patient privacy, phi, pixel tracking, tracking pixel
Posted in Email Marketing, LuxSci Library: HIPAA
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The Future of Protected Health Information

Wednesday, May 10th, 2023

HIPAA was introduced in 1996 to protect patient privacy and enable individuals to control their health records. However, over the last 30 years, the proliferation of technology has enabled patients to collect, transmit, and store personal health data in ways that were unimaginable to the original authors of the legislation. This article discusses how the definition of protected health information may expand in the future to account for new types of data, covered entities, and technologies.

the future of phi

Protected Health Information Today

Under the current iteration of HIPAA, protected health information, or PHI, is defined as “individually identifiable protected health information.” Protected health information refers specifically to three classes of data:

  1. An individual’s past, present, or future physical or mental health or condition.
  2. The past, present, or future provisioning of health care to an individual.
  3. The past, present, or future payment-related information for the provisioning of health care to an individual.

For protected health information to be “individually identifiable,” the data must be linked to a specific individual (even if this is very indirect). There are 18 types of identifiers for an individual. Any one of these identifiers, combined with health data, would constitute PHI.

protected health information

In addition, under today’s HIPAA rules, only covered entities and business associates must abide by the regulations. Covered entities fall into three categories:

  1. Healthcare providers include hospitals, doctors, clinics, pharmacies, nursing homes, psychologists, and other providers.
  2. Health plans – Health insurance companies, company health plans, HMOs, and Government-paid health care plans such as Medicare are all considered health plans.
  3. Healthcare clearinghouses – These entities either process or facilitate the processing of health information they receive from other entities.

Business associates include a wide range of companies, but most importantly, they are contracted by a covered entity to perform a business function involving PHI. Business associates can include web hosts, billing companies, marketing agencies, legal firms, accountants, and more.

The Future of Protected Health Information

As the world has rapidly changed, new technologies that challenge how we think about personal health data have evolved. IT security teams must consider future security challenges and regulatory changes to futureproof their organization and mitigate risks. Below we explore how technology and PHI have progressed in a way that is pressuring regulators and legislators to protect patient privacy.

Technological Advances

The smartphone was still a decade away from being invented when HIPAA was introduced. In today’s world, the success of the iPhone has trickled down to other internet-connected smart devices like watches, scales, and other wearable devices. Even medical devices, including heart rate monitors and remote patient monitoring devices, can be found in people’s homes today. When medical providers ask patients to use these devices to capture biometric data, HIPAA rules apply.

But what about when healthcare providers do not recommend these technologies? If a consumer wants to use an application to record their daily activity, record their weight, or monitor their heart rate without direction from a doctor, HIPAA does not apply. However, due to the sensitivity of the data and lack of consumer understanding, some are calling for additional privacy protections for device and application manufacturers. It is not hard to imagine that any application designed to collect, store, or transmit health data will become subject to stricter regulations regardless of whether they are involved in an individual’s healthcare.

New Types of Data

When HIPAA was envisioned, genetic science was progressing but still confined to the upper levels of academia and research. Improvements in genetic testing and increased knowledge of the human genome could completely alter what is defined as PHI and how individuals interact with their healthcare providers. In 2013, amendments to the Privacy Rule clarified that genetic information is PHI and needs to be secured. However, over the past decade, genetic testing capabilities have exploded. Anyone can order a genetic test from numerous consumer-facing companies. As a result, personalized medicine is thriving and is likely to grow over the next decade.

As doctors have more access than ever before to information about our genomics, it’s of the highest importance to ensure it is secured.

Change is On The Way: Are You Ready?

Covid-19 rapidly accelerated many of these technological changes, and recent events in the news have already sparked changes to HIPAA enforcement. For example, the use of online tracking pixels to collect and transmit PHI recently caused OCR to issue a statement on their proper use. In addition, last year’s Supreme Court decision in Dobbs vs. Jackson Women’s Health spurred many reproductive health-tracking apps to take additional steps to protect users’ data. The incident highlighted just how much personal health data is contained in unregulated applications.

Even without government intervention, organizations that process health data must secure it to build consumer trust and differentiate from the competition. With breaches and cyberattacks on the rise, only the best-prepared organizations will be able to grapple with future challenges and regulatory changes.

Tags: dna, ePHI, genomics, health applications, health apps, hipaa privacy rule, patient privacy, phi, smartphone
Posted in LuxSci Library: HIPAA, LuxSci Library: Security and Privacy
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