The Most Disturbing PrEP Study Yet
Sharing biometric data via a wearable device?
I was just alerted to the following report:
This study, with a real mouthful of a title, was published yesterday in PLOS Digital Health and enrolled 131 cisgender men recruited via an advertisement on Grindr. The aim of the study was to “[explore] the willingness of MSM with substance use to share digital phenotypic data and interact with ancillary systems in the context of DPS-measured PrEP adherence.” No, we don’t have the drivers license bureau involved with PrEP (can you imagine?); a DPS is a “digital pill system.”
What is a “digital pill system” anyway? Well, it is wildly disturbing (all emphasis is mine):
One possible strategy to measure PrEP adherence is using a digital pill system (DPS) that activates directly in the stomach and reports adherence events.
How is this going to work exactly? Will a sensor be attached to the pill? These are questions that must be answered. The pill activates directly in the stomach? I’m starting to think that the people that were worried at the beginning of Covid that we would be implanted with microchips might have actually been onto something. Here’s the explanation as to how it works:
The FDA-cleared DPS (etectRx, Gainesville, FL) comprises a standard gelatin capsule with an integrated radiofrequency emitter that over-encapsulates PrEP. Upon ingestion, gastric chloride ions activate the radiofrequency emitter, transmitting a prespecified radiofrequency signal to an off-body wearable device (Reader), which stores and forwards ingestion data to a smartphone app, where DPS users and clinical or research teams can view real-time adherence data. This system can also serve as a platform for the delivery of tailored adherence interventions, which can be directly informed by changes in detected PrEP adherence patterns over time
Moving on. Besides the DPS, which isn’t disturbing at all, the other “ancillary systems” to be “interacted with” include so-called “indirect methods” such as self-reported pill counts, pharmacy refill reports, and so-called “smart pill bottles,” and “direct methods” such as “video-assisted observed therapy” and “measurement of drug levels in biological matrices.” Additionally, they propose interventions such as text reminders and social media notifications to encourage compliance.
The one time cross-sectional, sample-based study was set up as follows:
Participants were recruited through an advertisement partnership with Grindr (West Hollywood, CA), a popular social network site that caters to gay, bisexual and transgender people. The study advertisement was delivered to 1,000,000 active US Grindr users via an inbox message, which was active for 24 hours in January 2022. The study advertisement was paid for by the study team via the Fordham University Research Ethics Training Institute (NIH R25DA031608).
The study team was composed of cisgender heterosexual and sexual minority people trained in research surrounding technologies and HIV treatment/prevention. No members of the study team have commercial interests in digital pill systems or the digital phenotyping techniques described in this manuscript. Grindr was not involved in the design or conduct of the study or data analysis.
Participants were asked Sociodemographic questions, and were assessed in the following categories: Willingness to participate in DPS-based research, Willingness to contribute digital phenotyping data and interact with ancillary systems in the context of DPS-based research, Medical mistrust (!), Substance use, and Daily PrEP worry.
Descriptive statistics were generated for sociodemographic variables. A multivariable logistic regression model was used to measure the association between each of the outcome variables (i.e., willingness to share smartphone data; self-collected blood work in the context of DPS-based research; use a wearable device paired to the DPS to collect biometric information during PrEP use; and to receive text messages asking about substance use, sexual activity, general daily activities, and locations) and independent variables of interest (i.e., daily PrEP worry, medical mistrust (GBMMS), and substance use (CAGE-AID)). A multivariate logistic regression model was used due to medical mistrust confounding the association between the outcome variables and the predicator variable of daily PrEP worry.
Willingness to receive text messages asking about substance use, sexual activity, general daily activities and locations??? So much for the concept of personal privacy—I hate to quote a Trudeau, but the first one once famously said that “the state has no place in the bedrooms of the nation.” He should have also mentioned the pharmaceutical industry to cover all bases. Moving on to results; this is all so creepy and depressing. Talk about enslaving an entire risk group for life.
In the least surprising news I’ve seen in a while, “Participants who reported being worried about daily PrEP adherence had 3.7 times the odds (95% CI: 1.026, 13.425) of being willing to share biometric data via a wearable device paired to the DPS, compared to those who were less worried, after adjusting for other predictors. Participants with higher medical mistrust were less likely to be willing to share biometric data.” So, generate fear about what might happen if you miss a dose of PrEP—that’s the most effective way to convince a person to take a harmful product. At least some of the participants expressed hesitancy about sharing their private medical information with data-gathering systems. We see similar results regarding “Willingness to share smartphone data” and “Willingness to participate in self-collected bloodwork.” Did they really need a whole study to demonstrate that if you gin up fear and terror, people will be more compliant? Indeed, this is their conclusion:
The DPS represents a unique opportunity for researchers, clinicians, and patients to better understand both PrEP adherence and nonadherence in the context in which it occurs. MSM with substance use may be accepting of DPS technology, willing to contribute digital phenotyping data, and willing to interact with ancillary systems in order to contextualize PrEP adherence patterns in a research setting. While substance use did not impact the willingness of MSM to accept these systems in this subsample, increased trust in the medical system and increased worry about daily PrEP adherence increased the likelihood that participants reported a willingness to interact with digital phenotyping, wearable devices, self-collected biological sampling, and text message queries to contextualize adherence.
Well, it looks like the future is now, and it is horrifying. This is possibly the most disturbing PrEP study I’ve seen to date—they’re saying the quiet part out loud. Selling pills isn’t enough, it’s now time to link our medication uptake to our phones to be overseen by God only knows what agencies to assess “compliance.” We often hear that our medical system is broken, but this proves that the brokenness extends far beyond medicine itself.
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You know it strikes me how this demonstrates what a self-fulfilling prophecy the medical system is when it comes to AIDS. 'Look, gay men are at risk for HIV infection!' So you target this 'risk group' with excessive testing, and then not only target testing wise, but also with drugs that require testing as part of the protocol. And then invasively nanny-state their adherence which is more testing.
It used to be that the state just forbid gay people from having sex and arrested them in their homes for this. Now they just make sure you're taking toxic drugs to have sex. It's all creepy.
Crazy, and scary.