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.

Reach new people

By producing material for publication on someone else’s platform you will reach different people. Whether you write a piece, are interviewed for a podcast, or participate in a video, when you’re published on someone else’s platform you reach different people than when you publish on your own platform.

You could reach more people. That’s every advocate’s dream: to reach a large audience. Generally, reaching more people is better.

You could reach a different demographic. It could be people who are younger or older. It could be people in a different region or country. It could be people with a different role in healthcare than you: a caretaker, a medical professional, a researcher, or a policymaker.

You could reach people who will benefit from your representation of life with diabetes. Your story confirms, or at least presents, possibilities. Possibilities for a better quality of life or triumph over adversity. And in that there is hope.

Be influential

By publishing on other people’s platforms you gain influence.

Not in a direct “I wrote the most compelling blog post every and now the world has changed” way. But in a more subtle, adding to the overall conversation and representing another point of view way.

As Tim Cook is credited with saying, “You want to be the pebble in the pond that creates the ripple for change.”

Add nuance, diversity, and the taboo to the conversation

In telling our stories we need to do more. We need to do more than just share the same old stories told by the usual suspects in the same old way. For some of us this may mean stepping aside to make room.

We need to share the details of our lives with diabetes, so that the the story is more nuanced. For some of us this may mean revisiting the lines drawn between private and public.

We need share the perspective that comes from our own cultures and backgrounds, so that the story is more diverse and comprehensive. For some of us this may mean taking the time to explain context for those who don’t know or understand it.

We need to talk about difficult, even taboo, topics. Sexual function, anyone? So that the story is more complete. For some of us this means moving out of our comfort zone.

Tell more and different stories to paint a more complete picture

Only when we share more of our stories and share beyond our familiar communities can we build a more complete understanding of life with diabetes.

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This post is a companion piece to Why patient advocates need to build their own platforms.

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.

Control is the reason advocates need to build their own platforms

Whatever form it takes, if the platform is yours you get to say pretty much what you want, when you want, and how you want. Short of committing libel or breaking some other law you have free reign.

There’s no editor to satisfy, other than the one in your own head.

There’s no content calendar to match. Want to talk about diabetes awareness outside of November? Do it! Want to share your reflections on a medical news item months after it’s been announced? Go ahead. Want to share moody pictures of you cat as a metaphor for life with a chronic illness. Okay.

On your own platform you can talk how you want. Salty language? Up to you. Raw emotion? That’s your choice. Want to use technical terms, readability score be damned? Go for it!

Tell your story the way you want to

Some argue that having other people in control is needed. They keep the information accurate and the story truthful. And by doing so they lend credibility to what you are saying. 

My response is to this argument is to say no one else knows what I have experienced in my life with diabetes. No one else can make sense of it for me. No one else can tell my story.

So to all the patient advocates out there I say this: Build your own platform so that you have a place to freely share your experiences and observations. To share your opinions. To share your truth.

Whether you reach one person or thousands, know that you are making an impact.

 

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.

Patients fall prey to the imposter syndrome, that feeling that somehow you shouldn’t speak up. You’re not qualified. When they (whoever “they” is) find out, something awful is going to happen.

The conventional advice for addressing imposter syndrome is familiar. It boils down to remind yourself of your achievements. But what if you’re doing something new and different? What if you’re just starting out as a patient advocate?

That’s the beauty of being a contributor and not a guru.

It totally re-frames your role of the patient advocate. You don’t have to be the expert. You don’t have to know everything. You don’t have to speak for everyone. You don’t have to lead the charge.

You just have to be a contributor.

There are lots of ways to contribute. Go ahead and choose.

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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