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.

Sitting at the advocacy table

A recent talk by Michelle Obama got me thinking about diabetes advocacy

Recently, after reading about a talk Michelle Obama gave in Indianapolis, I got to thinking about patient advocacy, particularly about patient advocates having a seat at the table where healthcare decisions are made.

We know that there are many tables in the world where decisions are being made that will have an impact on our health and lives. Some of those tables are in government settings. Others are in medical settings. Still others are in corporate settings.

Whether it’s at a hearing, conference, industrial meeting, clinical trial, or in a doctor’s office. Every day people are having discussions and making decisions that will decide our fate. These discussions determine what resources, if any, are put to finding cures. These decisions determine the affordability and availability of treatments and care.

Every one of these tables could benefit from including patient voices in the discussion. After all, we’re the ones who deal with the day-to-day reality. We’re the ones who suffer the consequences or experience the benefit.  We’re the ones who can help them figure out if there’s a market for the devices, drugs, and treatments they want to sell.

As the saying goes, #NothingAboutMeWithoutMe.

"There are a lot of people who get to the table, and they're too nervous to add that value. Because a lot of times, they get to the table and they're so concerned with not losing the seat at the table." -- Michelle Obama

Once a patient gets a seat at one of these tables the stakes are high. Even when that one patient takes pains to say she is speaking based on her own experience and knowledge, her words are taken as speaking for thousands, maybe even millions, of people. This responsibility can weigh heavily.

It’s not easy to get a seat at the table. The patient has to be invited. Which means the host needs to know the patient or their advocacy work in some way. The host is looking for an influencer, someone who can share and promote what happens at their table. Part of being a patient advocate who gets a seat is being visible and having a following.

Usually the host pays travel expenses for the patient to participate. Because something of value has exchanged hands a formal agreement is usually signed. And the law requires that the patient disclose this arrangement any time she writes or talks about being at the table and what happened there.

We patients realizes that our seat at the table is not guaranteed. Just because we were asked to participate once doesn’t mean we’ll be asked to participate again. There’s no guarantee that any other patient will be asked to participate ever again.

Knowing this, it’s natural to wonder “What happens when I no longer have a seat at this table?” Fear can take hold. “What if I say something wrong? Will that mean to no other patient will be invited to this table?” Worry can take over. “Maybe I should be careful what I say. Maybe I should just stay quiet.”

To that I say, “Be brave. Speak up.”

“We’re everywhere right now. But if we’re everywhere being quiet, if we’re everywhere being afraid, then we’re not really using the leverage to our advantage.” –Michelle Obama

Remember, we don’t lose our voice if we’re not asked back to sit at any particular table. We only lose access to someone else’s platform.

And maybe, just maybe, that platform isn’t for us.

There’s no guarantee that the other people at that table understand, accept, or even value what patients have to say. They might not be in a position to use what we offer in terms of information, knowledge, and insight.

“Maybe you say something that gets you kicked out of the table. Well, maybe that’s not a table you need to be at.” –Michelle Obama

Thankfully, patient advocates have access to social media, patient communities, and advocacy organizations. We can, and have, build our own platforms for communication and influence. An amazing array of decision makers pay attention to social media these days. Actual discussions of health issues take place on Twitter and Facebook. Activism is now part of most advocacy organization playbooks.

We can lift our voice wherever we are, whenever we have something valuable to share.

We just have to keep at it.

“I was loud and persistent. OK, maybe not always loud, but always persistent.” –Michelle Obama

Perceptions of Stigma in the Diabetes Online Community

Perceptions of Stigma in the Diabetes Online Community – a poster presented at 2017 IDF Congress.

Perceptions of Stigma in the Diabetes Online Community

iDOCr presented this poster at the 2017 IDF Congress. You can read more about this at

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.

Continue reading “Digital Health Product Review: mySugr and Accu-Chek Guide”