by Carolyn Thomas ♥ @HeartSisters
Consider the familiar pain we call brain freeze.
That’s the universal experience of feeling a sharp pain in the forehead right between your eyes after you eat or drink something that’s icy cold. But when you feel this pain, it simply means that your hypersensitive nervous system is making a mistake.
Continue reading “Brain freeze, heart disease and pain self-management”
by Carolyn Thomas ♥ @HeartSisters
I’m very sad to report that Erin Gilmer died on July 8, 2021. Rest in peace, Erin.
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I asked permission to republish this letter written by patient advocate and health policy attorney Erin Gilmer, who has lived in poverty brought about by debilitating chronic illnesses.
Erin offers a unique patient perspective in this letter to the organizers of the annual Medicine X conference at Stanford University. After writing her letter, she was subsequently invited to speak at Medicine X 2014. Although not well enough to travel to California in person after recovering from spinal surgery, she was thrilled when Medicine X organizers offered to put together an edited recording of her presentation to be shown to both live and online audiences on September 5th, 2014. (Sadly, her video presentation is no longer available on the Stanford site, but this is a copy she sent me of the letter to Medicine X organizers):
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“Dear Medicine X Conference organizers,
“Your upcoming healthcare conference forum on under-served populations brings up a concern for me that I hope you will consider in the next few months. The best way I can explain my concern is through this example: Continue reading “Erin Gilmer: “Us” vs “them”: the under-served patient speaks up”
by Carolyn Thomas ♥ @HeartSisters
I was one of the four patients interviewed for the Center for Advancing Health report called Here to Stay: What Health Care Leaders Say About Patient Engagement. It’s an interesting, illuminating and frustrating document to read.
The late Dr. Jessie Gruman, president and founder of the CFAH, wrote in her forward to this report:
” What are people talking about when they say ‘patient engagement’ anyway? That phrase encompasses so many concepts and ideas that it’s become meaningless.”
As I wrote here, my own concern (as a person who’s pretty darned engaged in my own health care) is not that the phrase is meaningless. It’s more that non-patients, business and industry have co-opted the concept of patient engagement for their own purposes.
And consider once again that, even in this impressive 170-page CFAH document that is all about patient engagement, there were only four patients interviewed – compared to 31 clinicians, employers/purchaser representatives, health plan administrators, vendors, community health leaders, government organizations, health care contractors and consultants.
Continue reading “Patient engagement (as described by 31 non-patients)”
by Carolyn Thomas ♥ @HeartSisters
News flash! Yet another new cardiac study from yet another group of respected Montréal researchers has been published in yet another medical journal suggesting that (…wait for it!) women receive poorer care during a heart attack compared to our male counterparts.(1)
As my irreverent Mayo Clinic heart sister Laura Haywood-Cory (who survived a heart attack at age 40 caused by Spontaneous Coronary Artery Dissection) once observed in response to a 2011 Heart Sisters post:
“We really don’t need yet another study that basically comes down to: ‘Sucks to be female. Better luck next life!’, do we?”
Well, Laura – apparently we do. Because those studies just keep on coming. . Continue reading “Cardiac gender bias: we need less TALK and more WALK”
by Carolyn Thomas ♥ @HeartSisters
I 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?”
Heart Sisters 