Some background.
I’m a big believer that wearable sensor technology can, and should improve life. I think that with the American healthcare system in the shambles it is, essentially we’re going to be on our own for most healthcare.
I’ve written elsewhere in this blog about the difficulties in finding or seeing competent healthcare professionals.
From Dermatology appointments that are booked 6-9 months out, to primary care physicians that can’t book an appointment until well into the future, with doctors that don’t even speak English well enough for the patient to understand their instructions. The medical industry for various reasons is a complete shitshow.
We needn’t talk about the fact that many primary care physicians these days rarely actually touch the patient. Instead they sit or stand behind their computers being data entry clerks. They’re reluctant to even do the rudimentary action of listening to the patient’s heart. Because the data entry is more important than the actual patient. (Except when it comes to insurance billing. Then they want to know about financial responsibility and next of kin so that they can track the patient down in the event that insurance doesn’t pay.)
Hey men, when was the last time your Doctor did the old “Turn & Cough” routine? How many of you even remember what that is?
How is it that America can claim to have the most advanced healthcare in the world, and yet have some of the poorest patient treatment outcomes?
There are some amazing “saves”. I’ve got a friend that is with us because his wife was dialing 911 before he hit the ground.
On the other hand, I’ve got another friend that got put through the medical wringer during COVID. Because of the delay in treatment, and requirements to be vaccinated. In his case a relatively minor skin cancer, ended up metastasizing throughout his system into lung cancer. (Uhh No, He never smoked.)
I myself have found that obtaining medical routine medical care is a “challenge” (Beware of any politician touting Medicare for all as one of their campaign planks.)
Because I believe that we’re going to be on our own, especially if you’re an average genetic male, one viable alternative is wearable sensors and their ability to provide daily medical data that we monitor ourselves. This kind of data gives us a baseline for our particular “Normal” and deviations from our “Normal” state, can guide us to take care of ourselves. At least it gives us a fighting chance to use the 6 minutes that a doctor is going to pay attention to us, wisely.
I picture it something like, “Hey Doc, this and this are out of my normal range, what should be done?”
I also think that having reliable telemetry would reduce overall healthcare costs by helping to reduce unnecessary and wildly expensive tests. Who hasn’t had their doctor demand exploratory testing only to find out that the test or tests were unnecessary?
Because I was a believer and willing to do what I could to advance the technology, I started participating in the Apple Health Research program via the Apple Research App. I’ve been doing this for years. The research app asked simple questions, and requested access to medical telemetry from my Apple Watch or other sensors and honestly was pretty darn simple and non invasive in my body or my life. I’d been enrolled in one study for 537 days.
Note I said “Was” and the other uses of past tense.
50 days ago I received an invitation about another study. This one was a little more involved. Nothing that I wasn’t willing to do, even including the study requesting some blood samples. Fine, I’m willing to bleed for my belief that technology is going to make us more independent of the “Medical Industrial Complex”.
Oh, I use that term with purpose.
By now it’s become painfully obvious that the Medical industry is nothing more than a mechanism for generating obscene profits, and in addition, the medical industry is probably as much about control of a populace that doesn’t ask questions. Those of us who do ask questions in an attempt to understand why a particular treatment is better than another, are listed as “Difficult Patients”. Once designated with this label, you’ll find your overall care is significantly degraded. Independent thought, or questioning the Arch Practitioners of arcane medical arts is seen as heresy. People who question, should be put into camps to die, right? Reference events from 2020 – 2024. There were entertainers, pundits, wags, and even some politicians, who said that kind of thing live, on air. Often to “seal claps” of a wonderfully compliant audience.
That kind of thing made my blood run cold, and fueled my desire to assist any real research. My hope was/is at least the technology could be improved allowing average, and reasonably intelligent people to use it to their advantage, providing hard data about their own bodies to push back against a medical person or establishment trying to railroad them into some treatment that was questionable. Or worse, touted as the only treatment available when there were other equally effective treatments that their physician simply didn’t like.
Oddly, if you look at outcomes, the key differentiator between one treatment and another often boils down to money. Either how much the insurance company will pay, or how much profit the hospital or clinic can derive. Many times, the patient outcome is the same, plus or minus a few percentage points.
So I was in. I signed all their paperwork, I noted that they were willing to pay a small amount for participation but that amount was trivial.
A week or so later I got an email confirming an “On boarding” appointment. That email contained a link to a website. Okay… The link required that I create an account. Hmm it’s just a teleconference appointment. I can set one of those up on FaceTime, or Half a dozen other services wherein only the administrator of the teleconference needs to have an account. The participants don’t have to provide any information whatsoever. All they need is a conference ID number.
Then I thought about it and remembered that because medical data is protected under HIPPA, they might need some kind of more secure conference. Okay, I created an account. I didn’t like it, but for the sake of the research it was probably worth it.
The conference day comes and I’m logged into the video site. The person on the other end of the call asks a bunch of questions and such. None of which were any different than something I’d tell a stranger. They walked me through changing a few settings regarding permissions on my phone so the research app could read that data, then the conference was over, and I was in.
Immediately, my phone started burning 10 – 15% more power per day. This was because the study was accessing my phone’s camera every single time the phone was moved. The theory was that they were trying to capture and process facial expressions and face shape using the onboard AI. I suspect there were two points to this image capture. One, was to insure that the phone was only being accessed by a single person. The second reason was to try to capture data that could be correlated to the mood of that person throughout their average day. (Was the person stressed, depressed, angry, sad, etc.)
The first issue was kind of dumb. If the person was only moving the phone but unable to unlock it, then they weren’t an authorized user. Any additional data captured about the person’s expression or facial shape was therefore moot. It would have to be excluded from the study data.
The second issue might have made more sense if the analysis only happened after the phone was unlocked. Trouble was, the study was burning energy capturing photos of the inside of hand bags, backpacks, ceilings, and back pockets. The analysis literally activated if I slid the phone out of the way to make room for something else on my desk or counter top.
I’m pretty sure the camera was active the entire time the phone was in my back pocket while I was walking the dog. I don’t know for sure, but I can say that the camera was active even before I unlocked the phone to read a text message or answer a phone call. So what valid data was the study actually getting?
How much of that data was going to be fed into some processor to refine the newer generation of cars that supposedly won’t allow you to drive them if an AI in the car decides you’re too angry, stressed or otherwise impaired to operate a vehicle?
I can tell you from experience, that transporting a loved one to an ER I was extremely stressed and very focused (You kind of have to be, doing 90MPH on a Southern California freeway where nobody obeys the “Slower traffic keep right” rule).
The last thing I’d tolerate in that situation was an AI in my car refusing to let me get a person to an ER. I’d be so pissed when I got back from a $300 taxi ride, or paying $500 to an ambulance that I’d go at an AI in my car with sharp objects and a soldering iron. Asinine Federal safety laws be damned!
This realization gave me pause about my participation in the study. I however continued.
Weeks go by and I grudgingly tolerated my phone “looking” at me & draining power no matter the situation.
Then came the email from the study. It was an email, that told me I had an email. You know the kind I’m talking about. We get them from our mortgage companies, insurance companies, and banks all the time. “Oh you have a message, login to your account to read this important message.” Then you log in and the “important” message is that interest rates have changed on your savings account. Duh, we all already knew that because the Prime Interest Rate was changed, or stayed the same, or another quarter closed.
In other words the important message could have been sent via normal email and didn’t require special handling.
I knew what the email from the study was. It was most likely a lab order requesting that I make an appointment to go have some blood drawn for the study. Since the study itself was a double blind study. It’s entirely likely that the name was a number, the billing code was one that belonged to the study, and the requested testing was a standard panel. None of which required security. In fact the message could have been sent to any modern email program fully encrypted if the study had simply provided a PGP or RSA key during the initial setup/onboarding.
To make matters worse, whoever sent the email, didn’t send a link. What they sent was an entire HTTP file that opened a page locally in my browser. Because the page had been opened locally with no connections to the actual server it was supposed to open on, the page failed. My email program had dutifully tossed the entire email into my “Junk Mail” folder because that is exactly the kind of behavior scammers use to trick people into resetting passwords and user names.
I, on the other hand knew what I was looking at, and pulled the file apart until I found that it was supposed to be a link to a secure CISCO Mail delivery program. I accessed the server properly and was presented with… You guessed it, “Hey you need to create another account. Please provide a unique user ID and a 12 character password. Don’t forget, your password must have upper and lower case characters, numbers, and at least 2 special characters.”
I tired using the unique user ID and password from the video conferencing account. No Joy! That was a different format. Then I realized I hadn’t used that conferencing account more than once. I wondered, “just how many accounts am I going to have to create and maintain with forced password changes every 90 days, for this damn study?”
I jiggled my phone on the desk putting down my morning coffee. My phone took a clear unobstructed 45 second long picture of my ceiling.
At that point, I’d had enough.
The research app has communications built in. My email has encrypted communications built in. My phone is burning power to no good end, and I wondered how many pictures they had of my private parts.
I was perfectly willing to be inconvenienced by going and having blood drawn but I wasn’t interested in some unknown number of accounts needing to be created in service of this study. I’m trying to minimize my digital footprint, and all these people were doing was expanding it.
Every single user ID and password these people wanted was another opportunity for some shithead hacker to get information they could use to screw me. And it was painfully clear that the people running the study weren’t particularly good with technology.
So I withdrew from not only the new study, but every study these people were running. If they can’t handle the basics, how can they be relied upon to correlate the data?
Then, I deleted the Research App from my phone.
The next day, I got a call from a lovely lady asking me if I’d gotten their email about my upcoming blood draw. “Uhhh yes I did,” I replied. She asked if she could help me set up the appointment and I said, “Uhh NOPE! Then explained I’d withdrawn from the study.”
She thought I’d withdrawn because I was afraid of the blood work. I explained that wasn’t the problem. Then explained what the problem(s) were. I continued, I as an older person had no interest in multiple accounts just to support their study and that perhaps they’d be better served having a single web page that supported all the necessary functions required by the study. I also pointed out that I was sure they’d gotten some lovely photos of my ceiling, my back pocket, and the inside of my backpack. I added I’m sure that someone was equally thrilled to have pictures of my “Johnson” too since I tended to be nude, surprisingly, in my own home, and my bedroom, in particular.
She was understandably flummoxed.
She recovered well, and pointed out that the call was being recorded. I said, “Great! Then there will be no confusion about why I dropped out.” I asked her to make sure the IT people, in particular those that came up with this insanity rethink their approach. While I’m willing to share information with them, I’m not interested in having my participation in their study become a full time job involving an unknown number of “Surprise” accounts that have to be created, just to deal with the basics.
She said she’d refer the matter to the IT people and that she’d initiate the payout for my contributions to the study.
I said, “That’s fine. The money isn’t important but a clean efficient study is.”
This morning, I got a call from the study payout group. Another lovely lady wanted to verify my email address because they were going to send me a “Virtual” debit card that would be loaded with $70. She went on to tell me that this card could be used anywhere, or that the funds on it could be transferred to my bank account or Apple Pay account.
“Okay, that’s fine,” I said. A minute later I got an email from the study payout group. They directed me to a website where my “Virtual” debit card awaited. Then I got another email saying that the debit card had $70 on it.
Sure enough, there was the card, and it claimed to have $70 loaded on it. But there was no way to transfer the amount anywhere. No matter, I had the number, expiration date, and security number.
I tried to use the card online to pay a couple of subscriptions.
I couldn’t.
While puzzling over why I couldn’t use the funds. I noticed the following in the terms and conditions.
Unless otherwise specified, not redeemable for merchandise, food and beverage. Allpurchases made with this card are subject to the applicable refund and exchange policy and the amount of ClinCard’s any refunds will be placed back on card. Not redeemable for cash except where required by law. Not reloadable. Not a credit or debit card.
There was also a helpful 1-800 phone number.
I called it. It was a Canadian Bank. After navigating through their phone tree I got a helpful person to whom I explained the problem and quoted the text above. Then I asked so what is this card good for?
He didn’t know. He helpfully suggested that I keep trying random sites until it worked.
Either it’s money or it’s not… I didn’t go into that with him.
I asked how I might transfer this cash to a usable platform.
He responded that I could go to their website or download their app, open an account, provide my banking information, and then I’d be able to transfer the cash to another account.
I fired back, “So you’re telling me that to get this $70, I’ll have to give you all the information necessary for you to steal my identity and since you’re in Canada international law applies, meaning that my privacy is not secure under even the most minimal laws of the United States and any disputes will be handled under EU rules or would that be under Canadian rules?”
He had no response.
So ladies & gentlemen, that’s how I made $70 selling my body and how that $70 is in no way real.
Beware virtual debit cards!
I rather suspect they’re nothing more than a mechanism to turn us all into data products to be sold to the highest bidder.
It’s a great scam if you think about it. These people offer you money you can’t access, then tell you to access those funds they’ll just need a little bit more information. When you give them the information they’ll give you the cash. On the back end, they’ll make 1000 times more money selling your information to data brokers.
The thing is, the clinical study could have texted the $70 to my phone number (which they had on file,) and it would have been loaded automatically onto my Apple Cash card. That would have cut out the middleman and provided instant payment.
They could also have sent it to Zelle, or Venmo. The accounting would have been no different. They just had to have yet another corporate entity in the mix.
Here’s the recap of corporations:
Apple
Brigham and Women’s Hospital, Harvard Medical School
GlobalMed
CISCO
SUVODA
ClinCard
Greenphire
Really?
And they turned on my phone camera for hours during the day, while using the devices and sensors I purchased to collect information for their study. They in turn, provided literally nothing but annoyance.
To anyone who might be reading this that is in the medical industry, Do Better!
The study cohort invites you into their lives and their homes. They give you information freely and while you claim to “pay” for that information, the reality appears to be much different.
I might consider joining another research study in the future. But I’ll be far more interested in doing so if that study was geared specifically to Men’s health issues. Right at the moment, I’ll be leaving the Apple Research application off my phone.