Back on Twitter and blogging after grief

My mother, Esther Paredes-Hernandez (1930-2018)

A little over a year ago, around the passing of my mother, I stopped posting on Twitter. I told myself that I couldn’t bear the cacophony of messages and nasty attacks I kept seeing in connection with the situation in Venezuela and the US. In reality, I needed to grieve, and grieve I did…

I continued to love my work at Livongo, I caught up with friends (in fact, I was able to attend an ADA Scientific Sessions that wasn’t all stress, crowned by an amazing midnight chat with Diatribe’s Adam Brown), but my presence in Social Media was limited to LinkedIn, the mandatory Lucas photos on Instagram, and the occasional check-in on Facebook once every month or two.

I went one step further: in August 2018, I attempted to deactivate my Twitter account, and it didn’t work. It really didn’t make me lose sleep, but today I am kind of glad, because earlier this month, as the Venezuelan crisis started heating up again a month ago, I couldn’t find fresh enough news on any mainstream media, and found myself looking at Twitter for updates. And as quickly as that… I came back to Twitter, Jan. 27. But who am I fooling? I never really left: I just needed to grieve, and grieve I did…

And, along with being back on Twitter, I find myself blogging again, which I hadn’t done since September 2017… inspired by my #DOC friend and remote worker extraordinaire, Scott Hanselman. It is my goal to post here a few times per month. I am working on the next post on how the subconscious can play you some wild tricks, including having you buy plane tickets for the wrong destination.

Review: @TandemDiabetes t:slim X2 Insulin Pump with Dexcom G5 integration

Manny Hernandez with X2+G5

Last year, when I the Tandem X2 pump that supports software updates via USB (the only pump to do so) was approved by FDA, and they announced that their first update would support integration with the Dexcom G5 CGM sensor, I signed up for it. I left my clunky Animas Ping behind and became a Tandem pump user.

Recently, FDA granted Tandem approval for the Dexcom G5 update. And today, I am happy to report I am sporting my Dexcom G5 data on my Tandem X2 pump, as you can see above. This post summarizes my experience and feedback during the update process and over the course of the first few days of using the integrated product.

The Update
Upon receiving the instructions with my Update ID (you need one to proceed with the update), I downloaded the Tandem Device Updater:
Tandem Device Updater
After I had the software installed and running, the update literally it took under 15 minutes. This even included completing the recommended safety steps.
Update successful
In (silly) defiance to the recommendation to do the update in connection with a site change, I found myself needing to load the pump as you would have to with a site change. So, while you technically can still continue to use your current infusion site, you will need to go through the process of loading the pump. And since you need to prime by letting a minimum of 10 units flow through the tube, if you do not have at least 50 units of insulin in your cartridges, I recommend you follow their recommendation, unlike what I did… :/

At this point, my pump looked pretty much like it used to before the update… because my Dexcom receiver had not yet arrived, and it took about a week to get here…

The CGM integration
Once my Dexcom transmitters arrived, I was able to continue with the process, and get down to the really exciting stuff.

Entering the transmitter ID is a bit more “fun” than the way you enter it on the Dexcom receiver, where there’s no keyboard. The advantage of a touch screen is that the screen can be turned into a keyboard, only not a full keyboard but more like a phone pad keyboard:
Dexcom keyboard
You are prompted to verify the Transmitter ID (enter it twice), which is different from the Dexcom-only experience too. Not too sure what this does for the process, but not a big deal either.

My anxiety to be done with the rest of the process got in the way, as did my Dexcom receiver freaking out and entering into a loop where it would reboot itself over and over, as if it had sensed that it was no longer going to be with me any more (I forgot to take pictures of the Dexcom receiver acting up, and I had to do some ninja stuff to get the recurring reboot to stop, so I owe you visuals of the Dexcom screens, but I am sure you have seen them before…)

Finally, after patiently waiting for the mandatory two-hour sensor warmup period (which gave me plenty of time to finish the training and configure alarms, etc.) at 11:21, on Sep. 6, 2017, I finally saw my Dexcom G5 data on my Tandem X2 screen! 🙂

First CGM time

The Training
It will take you up to 30 min to complete the Remote Software Update – CGM Integration Tutorial. This is if you are new to the CGM or the Dexcom G5, since it covers CGM basics, how to insert the sensor, snap the transmitter, etc. I liked that it included these types of quizzes to confirm you have retained the key concepts that you’ve learned:
Not a huge deal, but the voiceover used in the tutorial was creepy at times. Also, I think the trainer speaking changes mid-module, which can be a tad disconcerting. Then again, not a huge deal.

Everyday use

After a few days of use, the pump battery has already shown signs of lasting less. This is not surprising, as it now has a Bluetooth radio to feed. But it’s still not necessarily the most fun extra thing to do. To be fair, it’s only one device vs. two (pump + receiver) I have to keep charging.

But the biggest downside I’ve found is that I am seeing the Out of Range icon in the place where you’d see the CGM reading more often than I would have expected, typically no less than a couple of times per day:
Out of Range 2
They indicate in the training that “Brief interruptions of up to 10 minutes [without CGM signal] are normal”. The truth is this doesn’t feel normal.

I have historically worn my pump in one pocket, on the same side of my body where I am wearing my infusion site. And I have my CGM sensor on the other side of the body (typically, both are on my abdomen). If I change my insulin pump to the opposite pocket (the one closest to the CGM transmitter/sensor), normally the Out of Range icon disappears shortly. I get that proximity matters to make sure the transmitter signal can get to the receiver in the pump, but we’re not talking 20 or even feet here, we’re literally talking inches… Although I am working on losing weight, I hope my belly is not the obstruction causing this! 😉

The verdict
I am delighted with being able to see my CGM data on my pump, period: full stop. Is it exactly the way I envision it? No. But it’s a MAJOR step for me, considering my choice of CGM at the present time (the world of CGM is changing rapidly so we will see what the future brings). In the meantime, here are two ideas (for my friends at Tandem and Dexcom) to make the integration better (which I assume they have already thought of):

  1. It would be amazing to offer the option to use a BG readings entered on the pump “side” of the device (while you are bolusing) to calibrate the CGM, or the opposite: offering the option to bolus for a BG being entered as part of your CGM calibration. Neither option is available, and they would make perfect sense. (Update, Sep. 10: Just realized that above target calibration BGs generate this prompt. Love it!) CGM calibration - correction
  2. Something that takes some getting used to is the fact that functions for loading the pump and for calibrating the CGM are respectively further out (in terms of button taps needed) than where they used to be pre-integration. I get that this comes with the territory, but I’d love to see the two companies explore ways to make the user experience a bit cleaner, specially re: calibrations which occur twice a day.

Why HIPAA Won’t Save You: Protecting Data Privacy

This weekend, I had the fortune to speak (and attend) SXSW Interactive Festival for the first time. I wanted to take the opportunity to share here some of the perspectives I brought to the panel titled “Why HIPAA Won’t Save You: Protecting Data Privacy” with my colleagues Amanda Sheldon (Medtronic Diabetes), Jane Sarasohn-Kahn (THINK-Health and Health Populi blog) and Marc Monseau (Mint Collective LLC).

Recent data breaches have made the American public more aware about the issue of privacy, and potential for their health information to end up in unwanted hands.

Still most people do not bother to scroll through a lengthy Privacy Policy, Consent Form, or Terms of Use… though we probably should! On page 30 there may be a provision that could very well allow the company providing us with the tool or service to sell or share your data in ways that you may not be OK with.

What can be done to make this process easier on the patient?

  • People with visual disabilities may struggle reading below certain font sizes (I am one of them!!), and legal documents are also frequently referred to as “the fine print”. It would make sense to use a bigger font for the most sensitive parts of the document.
  • People learn from information differently: there are people who are visual learners, there are people who are auditory learners, etc. and even if all people could become informed by reading alone, lengthy documents make them ineffective. Having a 1-pages summary or an infographic with key elements from the policy would be a tremendous advance on this front.
  • People’s literacy level (health literacy, ability to understand legalese) can also get in the way. Even if the information is there and it’s accessible to the patient, they may not be able to understand what it means.
  • Last, even if you understand what the information means, you may not be able to understand the mid-to-long term implications. This is the hardest item to address, because it involves implications that may not be apparent today.

As my friend, Health Policy Attorney, and Patient Advocate, Erin Gilmer told me:

HIPAA is meant to give patient rights and ensure patients can trust that the system will keep their PHI safe – only used for treatment and payment purposes. [But] it has not yet evolved to tackle the sharing of data via social media or apps or websites or forums.

Makers of apps, devices, etc. where health data is being collected and/or shared need to do the right thing for the patient. That will go a long way towards protecting their privacy:

  • Almost every piece of data that is collected about someone using your product could have health implications: GPS data, mobile device usage, etc. so it needs to be treated with the same care as an A1c, weight, or cholesterol value.
  • Only data that is needed to do the job should be collecting. Just because you can ask for a piece of data doesn’t mean that you should, if you are not going to use it.
  • If you need to collect a piece of data, first default to do it in an anonymized or aggregated fashion, if it can give you the information you need.
  • If you are going to use the piece of data that is personally identifiable information, remember the Mom Test that Jane talks about: would you trust the system with your own mother’s data?
  • Don’t hide behind regulation or lack of guidance to justify the small print, the cryptic language, or the obscure links. KISS = Keep It Simple and Stupid!
  • People will not necessarily resent that their data is sold, as part of their usage of the product. But two things need to happen for this to work out: (1) they need to get a compelling benefit from the experience (and often it’s not a monetary incentive, but rather a sense of being part of something bigger, advancing science, etc.) ; (2) they need to CLEARLY understand that their data could be sold, and probably be told so again as it’s about to happen (always remember they are on the driver’s seat). A great example of how this has been done well is PatientsLikeMe.
  • Life happens and health changes with it, so products we interact with should allow us to update our privacy preferences easily at any point. Reminders about what is being done with your data, or what parts of your data are being used in ways that could affect your privacy build an environment of trust that is essential for a healthy ongoing relationship with your customers. “When data is your primary currency, trust is fundamental for your business.”
  • Every maker should provide users with a way to access their data easily in a truly portable format. A PDF is not a portable format (no matter what the acronym may stand for). Data siloed behind a company’s walls is not portable. Remember: the patient is in the driver’s seat and they OWN their data. Just because a company collects data doesn’t mean they own it. They are mere stewards of our data.

At the end of the day, it’s about placing the interests of the patient first and doing so with transparency and openness. While it is perfectly fine for companies to protect themselves, it cannot be done at the expense of the interests and the privacy of the consumer. This is something where everyone (patients, companies, and regulating entities) have a role to play.

Thank you to the following people whose incredible insights that helped make my participation (hopefully) more useful to those in attendance:

  • Erin Gilmer – Health Policy Attorney, and Patient Advocate (@GilmerHealthLaw)
  • Dana Lewis – Moderator for #hcsm, Patient Advocate (@danamlewis)
  • Melissa Lee – Exec. Director for Diabetes Hands Foundation, Patient Advocate (@sweetlyvoiced)
  • Brian Cohen– Lead Administrator for, Patient Advocate
  • Other generous members of