I had a moment yesterday. It was a moment of frustration as I looked at the speaker lineup for a conference I was curious about. It was a global conference, so the ideas on the agenda had the potential to affect billions of patients instead of mere millions had the conference been national. Of the 26 speakers featured on the site, only one was from a patient organization.
A few weeks ago, I wrote a post asking healthcare decisionmakers to take a moment to examine how they are communicating, just to make sure they were really communicating what they thought they were. Because when you talk about people as subjects, it’s hard to understand how those subjects might be receiving what you are trying to say.
Here’s a little context.
I was sitting in a webinar a few months ago. It was full of people talking about what’s best for patients. As usual, I was the only one representing herself as a patient on the call. I wanted to wave my arms and say, “Hello . . . I’m right here.” It was just so weird to be talked about when they could have been talking to me. Even in the meetings where they know I’m there, rare is the moment when anyone asks, “As a patient, do you think that would work? Would it work for you?”
Not that this is rare, hence the frustration. I feel like a broken record sometimes.
It brought to mind an episode of the original Law and Order. In the episode (Fluency, Season 15, episode 14), the bad guy had replaced flu vaccine with saline and people had died. At the end of the trial, prosecutor McCoy suddenly recalls a scene from The Third Man, a movie from 1949 about a black marketeer who dilutes insulin and bad things happen. McCoy describes the scene at the end of the movie:
“Orson Welles goes on a ride on a Ferris wheel, and it stops when they reach the top. His friend, who's played by Joseph Cotton, asks, "Why? Why did you do this?" Orson Welles says, "For the money." Joseph Cotton is horrified: "Have you no conscience? How do you live with yourself?" Orson Welles points to the people on the ground, and the people on the ground are very small, walking around in the square. Orson Welles says, "Would you really feel anything if one of those dots down there suddenly stopped moving?"
Not that I think healthcare decisionmakers have nefarious intentions. I know they don’t. To a one, the people I have met during my public patient journey have been earnest and well-intentioned, creative and driven. But when I hear these discussions and feel the weight of representing the millions of patients who would be affected by the subject matter all by myself, it makes me feel like one of those dots Orson Welles was talking about, as if no one would really notice, and the discussion would not change at all, if I suddenly stopped moving.
I think the people I work with would be horrified if they knew that this is how I feel. A lot of it comes from having to say the exact same thing in meeting after meeting, webinars, conferences, working groups, name your discussion format. But I also think they would understand.
Aside from a more robust discussion with more viewpoints represented, this is why we need more patients present in all of those discussions. We become less like dots and more like the parents, children, siblings, friends, and colleagues we are. More patients = better solutions, I promise.
And I am tired of being a dot.