Why patient advocates need to produce for other people’s platforms

Patient advocates can keep the one story from becoming the only story by producing materials for other people’s platforms.

Once again I’m cutting straight to the chase. The reason individual patient advocates need to produce for other people’s platforms is, in one word,  “reach.”

A few months back I was interviewed for an article about people with type 2 diabetes who use insulin. At the end of it the interviewer actually said to me, “Huh, it’s more nuanced than I thought.” In my head I said to myself, “Yeah, it’s not just needles are scary and insulin equals failure.” Even though I kept my snark to myself, I was shocked that an experienced health journalist seemed to have such a narrow understanding of life with diabetes. 

It made me realize (once again) how important amplifying all of our voices is in telling the complex and more-complete story of life with diabetes. Other people (both inside and outside of the diabetes community) have no way of knowing what life with diabetes is really like for you if they never have the opportunity to hear from you. Producing material for other people’s platforms gives people a chance to hear from you.

But don’t just blindly produce material for any other platform. Consider the potential impact in your decision.

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Why patient advocates need to build their own platforms

Virginia Woolf spoke of A Room of One’s Own. I’m suggesting A Blog of One’s Own. Or a podcast. Or a video channel. Or a website.

I’m cutting straight to the chase. The reason individual patient advocates need to build their own platforms, in one word, is “control.”

A platform of One’s own

Virginia Woolf spoke of A Room of One’s Own. I’m suggesting A Blog of One’s Own. Or a podcast. Or a video channel. Or a website.

Somewhere you can publish your thoughts and observations without interference.

I’m not talking about a platform where someone else makes the rules. Where someone else sets the editorial boundaries and enforces them.

I’m not talking about a platform where you have to buy ads to get in front of an audience.

I’m not talking about a platform where they lure you in with the promise of easy setup and site management, until they change how their platform works.

I’m not talking about a platform where, somewhere buried deep in their terms & agreements, they say they own all the content shared on their platform.

I’m not talking about a platform where, if the shareholders or investors don’t see a profit or decide they no longer want to be in the platform business, they can simply shut it down.

I’m talking about your own corner of the online universe.

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Be a contributor, not a guru

“You don’t have to be a guru, you can be a contributor…” I had never heard of Denise Duffield-Thomas, but what she said resonated with me as wisdom for patient advocates.

I don’t even remember how this item came into my social media feed. I had never heard of Denise Duffield-Thomas, but what she said resonated with me as wisdom for patient advocates.

“You don’t have to be a guru, you can be a contributor. If you really care about a topic, be a contributor. You don’t have to know everything.”

Too often patients (and their caregivers) censor themselves.

They don’t feel qualified. After all most patients don’t have medical degrees or some other kind of formal credential. So, what?

They worry that their knowledge is based “only” on their personal experience. Can the one speak for the many? Guess what, most medical professionals don’t have any personal experience with diabetes, or any other chronic illness or disease, and yet they generalize.

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Digital Health Product Review: mySugr and Accu-Chek Guide

Bottom line: The mySugr-Accu-Chek Guide integration is both delightful and disappointing.

Previously, I reviewed the mySugr diabetes logging app and the Accu-Check Guide glucose meter separately. In this post I review of how they work together.

mySugr supports data transfer from several BG meters

The mySugr app supports data imports from several meters. I tested out its integration with the Accu-Chek Guide. The experience was a mixed bag.

auto-magic data transfer

Once connected, the Accu-Chek Guide sends the glucose reading, date, and time to the mySugr app on a smartphone using Bluetooth. The BG reading appears in the mySugr app with an asterisk [*] and the note “Blood glucose verified by AccuCheckGuide.”

This cuts out one very important step in logging: manually entering the BG reading into the app. While that may seem like a small thing to the uninitiated, for me the logged BG reading becomes the basis for filling in the details as-I-go and when I do my end-of-day review. I don’t have to go back and forth between the meter and the app to capture the day’s readings. Which, believe it or not, I find fatiguing.

The second auto-magic thing the date transfer does is, if you do make a manual entry into mySugr with a time stamp very close to the time stamp of meter’s BG reading, both entries are merged into one. So, instead of ending up with a series of partial log entries you get a single, consolidated entry. This is delightful.

BG readings auto-magically transfer to the mySugr app

This also means that if you manually enter the BG reading into the app the meter will overwrite that number when the data transfer happens. You know this has happened when you see the asterisk next to the BG reading in the mySugr app.

The disappointing thing about the data transfer is that it only transfers the date, time, and BG reading. The Accu-Chek Guide gives you the ability to tag each BG reading as being before or after a meal, at bedtime, or other. Even though these tags align directly with tags in mySugr, they don’t transfer automatically.

bluetooth frustrations

mySugr and the Accu-Chek Guide connect using Bluetooth. Bluetooth is wobbly-bobly.

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