Tag Archives: WPLongform

Brain freeze, heart disease and pain self-management

14 Sep

by Carolyn Thomas  @HeartSisters

Part 2 of a 3-part series about pain

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.
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“Us” vs “them”: the under-served patient speaks up

13 Jul

by Carolyn Thomas  @HeartSisters

I asked permission to republish this letter written by Erin Gilmer, an American friend who’s now living in poverty brought about by debilitating chronic illnesses. A patient advocate and health policy attorney, 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. You can watch it here.

“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

Patient engagement as described by 31 non-patients

6 Jul

by Carolyn Thomas  @HeartSisters

I was one of the patients interviewed for the recently published Center for Advancing Health 2014 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 said here in 2012, 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 also 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, community health leaders, government organizations, health plans, vendors, health care contractors and consultants.
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Cardiac gender bias: we need less TALK and more WALK

23 Mar

by Carolyn Thomas  ♥  @HeartSisters

News flash! Yet another new cardiac study from yet another group of respected 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 and heart attack survivor Laura Haywood-Cory from North Carolina 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

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

17 Dec

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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