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.

———-

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.

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