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

Heart Sisters

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?”

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2 comments on ““We are all patients.” No, you’re not.

  1. Thanks Lorraine for reposting this for your readers. Sadly, just this week I’ve been hearing of “patient engagement” conferences that include lots of hospital CEOs and tech types onstage – but not one patient. Seems like we still have work to do…


    • Thanks for writing it Carolyn! It badly needs to be said. I’ve been pleased to speak at the vasco da gamma European conference for young GPs and the Irish College of GPs conferences but there needs to be far more patient involvement. What strikes me as most ludicrous, particularly for thyroid patients, is that the drugs they approve are tested on males when this disease affects ten women to one man. There is a strong link with hypothyroidism and heart disease and yet when woman complain that the symptoms remain on Levothyroxine, including terrifying chest pain and ectopic beats, they are dismissed out of hand. What will it take for medicine to really hear the patient? We already know that almost 50% of clinical trials are never published, usually the trials showing poor results for the pharma company. Can we say that current medical practice is safe then? I don’t think so.

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