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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