RFK Jr. Wants Everyone To Use Health Wearables. Should Patients Be Worried?

By Crystal Lindell

Call me a conspiracy theorist if you want, but I’m skeptical about a governmental push to get everyone to use health wearables. 

How much day-to-day or even minute-to-minute data do we really need about patients? And how much health data do we really want stored in the data cloud in the sky, for anyone to access? 

Health wearables is a broad category that typically includes everything from Apple Watches to blood glucose patches. And Robert F. Kennedy Jr., Secretary of Health and Human Services, has launched a new initiative to get everyone to use them. 

He spoke about it during a recent hearing of the House Subcommittee on Health, as reported by ABC News. 

"It's a way … people can take control over their own health," Kennedy said. “They can take responsibility. They can see, as you know, what food is doing to their glucose levels, their heart rates and a number of other metrics as they eat it, and they can begin to make good judgments about their diet, about their physical activity, about the way that they live their lives.

"We think that wearables are a key to the MAHA agenda -- Making America Healthy Again. My vision is that every American is wearing a wearable within four years."

It might sound good at first. After all, a continuous glucose patch is more convenient for a diabetic than having to constantly prick their finger for their glucose readings. 

But I think patients should remain skeptical of such a push for more health wearables – especially when it's coming from the government. 

First, I do think there’s such a thing as too much data. Most people don’t need to know exactly what their blood glucose level is at every moment of the day. I have relatives who’ve used glucose patches, and not only were the readings often inaccurate, but the very expensive patches were also hard to apply and fell off early.

In other words, having continuous data does not inherently make a health monitor better than alternatives. 

Also, having access to how many steps you’re taking daily or what your heart rate is during a workout can quickly turn into an obsession, trying to get arbitrary numbers to show up on your device. 

Can Tech Be Trusted?

Beyond that though, I do think people should be skeptical about multiple stakeholders having access to a bunch of our health data. 

Tech companies that create the devices can’t be trusted to use the data responsibly or to keep it private. They already routinely hand over cell phone data to law enforcement agencies. 

Recently a bankruptcy judge approved the sale of 23andMe's genetic data on 15 million people to a research institute. Many of those users are now scrambling to delete their data before the sale is completed. 

I’m also not convinced health care providers can be trusted with it either. I can imagine a world where doctors look at heart rate data from your Oura Ring and declare that it’s too steady, and thus you must not really have chronic pain. 

Patients will never win though, as I’m sure doctors will be just as likely to dismiss data that would show that your pain is legitimate as “some gimmicky” information from a tech company. 

And God forbid they create a mass-produced device that can measure something like opioid use through our sweat and then make pain patients wear it to show doctors if they’re using their medication exactly as prescribed.

That’s not so far-fetched. Years ago, a tech company developed an experimental wristband device that tracked skin temperature and movement, and tested it on ER patients given opioids for acute pain. The theory was that opioid users are more likely to fidget or show restless activity when they feel it’s time for another dose, so that would be an easy way to track their opioid use.  

More recently, another company has been developing a smartphone app that can evaluate your health and vital signs just by analyzing a selfie image taken by the camera on your phone.

But again, it’s the fact that this whole push for more wearables is coming from a government agency that should really alarm people.

If they gain access to it, they could use it to kick people off programs like Medicaid, increase insurance premiums, and potentially even arrest people. I especially worry that low-income patients could be coerced into using health wearables in order to continue to qualify for benefits and access to services. 

Remember the COVID vaccine conspiracy theory that the government was using the vaccines to inject small microchip trackers into everyone? It was obviously untrue, but now the government literally wants everyone to wear health trackers. That should alarm anyone who was ever concerned about governmental surveillance.

My advice to patients is to resist using too many health data trackers. Yes, they can be helpful in some cases. But there is a point where both the wearer and the monitors have too much access to data. 

At the end of the day, the real question is, who will be tracking the health trackers?

Is Your Personal Health Data For Sale?

By Pat Anson, PNN Editor

Many U.S. consumers believe their personal health information is protected under the Health Insurance Portability and Accountability Act (HIPPA), a federal law that requires healthcare providers and insurers not to share a patient’s sensitive health information without their consent or knowledge.

A new study on consumer data brokers and a federal complaint against a popular drug discount service show otherwise, with patient names, social security numbers, email addresses, prescription drug use and other personal information routinely being sold to third parties.

The Duke University study on data brokers focused only on mental health records, but gives you a good idea of what’s available on the open market. When researcher Joanne Kim contacted 37 data brokers asking to buy mental health data on millions of patients, 11 of them offered to sell her the requested data, which included information about whether an individual was being treated for depression, anxiety or insomnia, and if they were prescribed drugs such as Prozac or Zoloft.

The asking price for the information was relatively cheap, with one broker offering data on 10,000 aggregated patient records for $2,000 – or 20 cents per record. The cost was even cheaper if the data was ordered in volume; 435,780 records were available for 6 cents each.

Many of the brokers did not provide Kim with a full explanation about their data or where it came from, making it difficult to determine whether the company was offering “deidentified” information. Some firms openly advertised data that included individual names, addresses, phone numbers and emails. One broker even offered to sell her the IP addresses and browser history of patients.

“This research highlights a largely unregulated data brokerage ecosystem that sells sensitive mental health data in large quantities, with either vague or entirely nonexistent privacy protections,” Kim wrote in her report. “Data brokers are collecting, aggregating, analyzing, circulating, and selling sensitive mental health data on individuals. This comes as a great concern, especially since the firms seem either unaware of or loosely concerned about providing comprehensive privacy protections.”

Due to the stigma associated with mental health problems, Kim says the easy availability of personal health data puts millions of patients at risk of discrimination from employers and insurers, or even theft from scammers who prey on vulnerable populations.

“The nation is in dire need of a comprehensive federal privacy law, and this report recommends that the federal government should also consider generally banning the sale of mental health data on the open market,” she wrote. “Such a law should include provisions that allow consumers to opt out of the collection of their data, gain access to their information, and correct any discrepancies. Furthermore, data brokers should be obligated to be more transparent about their use and exchange of data, as well as have more controls in place for client management.”

One potential “client” that Kim doesn’t mention is law enforcement. In 2020, the Drug Enforcement Administration asked data brokers to submit bids on a potential contract for a surveillance program that would track at least 85% of U.S. prescriptions for opioids and other controlled substances. The DEA was seeking “unlimited access” to this prescription data, including the names of prescribers and pharmacists, types of medication, quantity, dose, refills and forms of payment.

While the contract was never awarded, it remains unclear what the DEA planned to do with the information or if it has found other ways to collect the data.

GoodRx Settlement

Where and how is personal health data collected? It could be as simple as a consumer trying to save money on medications.

The Federal Trade Commission recently reached a $1.5 million settlement with prescription drug discount provider GoodRx for failing to notify consumers that it was selling their information to Facebook, Google and other third parties for advertising purposes.

GoodRx offers considerable savings to patients who enroll in its free drug discount program, and makes money by selling their health and contact information to third parties. For example, according to the FTC complaint, GoodRx shared patient health data with Facebook, which then targeted them with advertisements for specific drugs to treat their health conditions.

“GoodRx’s sharing of personal and health information has revealed highly sensitive and private details about its users, most of whom suffer from chronic health conditions. This has led to the unauthorized disclosure of facts about individuals’ chronic physical or mental health conditions, medical treatments and treatment choices, life expectancy, disability status, parental status, substance addiction, sexual and reproductive health, and sexual orientation, as well as other information,” the FTC said.

“Disclosure of this information without authorization is likely to cause GoodRx users stigma, embarrassment, or emotional distress, and may also affect their ability to obtain or retain employment, housing, health insurance, disability insurance, or other services.”

In a press release, GoodRx said the FTC was focusing on an “old issue” that it addressed and corrected three years ago. “Millions of Americans use GoodRx to save on their healthcare, and we take strong measures to ensure they can trust us with their information,” the company said.

Data mining isn’t limited to healthcare providers, advertisers, internet companies or law enforcement. Medical researchers also use it, to track and evaluate patient conditions and the effectiveness of treatments. Some would also like to use data to predict patient outcomes.

In a new study, researchers at the University of Alberta said they had devised a form of artificial intelligence -- based on patient health data -- that can predict with 90% accuracy whether a patient is at risk of an adverse outcome from opioid prescriptions. Researchers say their model could be used someday to warn doctors about high-risk patients, so they can prescribe another drug or give smaller doses.