My open letter to “Patients Included” conferences

different red chair

by Carolyn Thomas  ♥  @HeartSisters

Dear medical conference organizers,

Thank you so much for inviting me to participate in your conference later this year. It is a real honour to be asked to help represent the patient voice at your prestigious event. I know that inviting patients alongside your impressive international roster of well-respected physicians is new to you. So congratulations on your interest in the  increasingly important “Patients Included” movement sweeping through medical conferences. By the way, here are the five qualifications your event requires in order to meet those Patients Included criteria.

But as I once wrote to patient blogger (and conference speaker) Carly Medosch:

“I can no longer afford to be ‘honoured’ by any more medical conference invitations.”

Allow me to explain:
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Oneupmanship: you think YOU have pain?

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by Carolyn Thomas    @HeartSisters

Have you ever been in the middle of telling somebody something important to you, only to be interrupted because what you’ve just said has reminded them of their own (far more fascinating!) story that clearly outshines yours? It’s a scene-stealing moment of oneupmanship. Or as author Stephen Covey once lamented:

“Most people do not listen with the intent to understand; they listen with the intent to reply.”

Oneupmanship is perhaps most memorably represented in the iconic Monty Python Four Yorkshiremen skit (pictured above) in which the lads sit around and argue about which one of them had endured the worst poverty in childhood. “A house? You were lucky to live in a house! We lived in one room, all 26 of us!”
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“We are all patients.” No, you’re not.

by Carolyn Thomas  @HeartSisters

patientI read recently about a conference on breast reconstructive surgery following mastectomy, to which not one single Real Live Patient who had actually undergone breast reconstructive surgery following mastectomy was invited to participate. This is, sadly, yet another example of “Patients Excluded” health care conferences – in stark contrast to the growing number of notable conferences that have garnered the “Patients Included” designation.*

The result of attending a “Patients Excluded” conference is just as you might imagine: hundreds of people working in healthcare getting together to talk at each other about caring for people who aren’t even at the table. Or, as one physician arguing for  “Patients Excluded” conferences protested online:

“I already hear patients’ stories all day long in our practice. Why should I have to listen to more stories at my medical conferences?”

Continue reading ““We are all patients.” No, you’re not.”