Tag: patient engagement

Patient partners share what can go wrong with patient engagement

~ Carolyn Thomas ~ 13 Comments

by Carolyn Thomas    ♥   @HeartSisters

The late Dr. Jessie Gruman was a beloved pioneering activist in the person-centered care movement, the founder of the Center for Advancing Health (CFAH) and the author of the book AfterShock: What to Do When the Doctor Gives You — Or Someone You Love — A Devastating Diagnosis.  She once defined the concept of patient engagement as “the actions people take to support their health, and to benefit from their health care” – a simple yet accurate definition. In 2014, I was interviewed for a CFAH report on patient engagement – a document I later described as “interesting, illuminating and frustrating”  in my follow-up essay called Patient Engagement (As Described by 31 Non-Patients).  I learned back then that how patients view patient engagement and how non-patients view it can be miles apart. And a new paper published this month may help to explain how this gap can affect patients themselves. Continue reading “Patient partners share what can go wrong with patient engagement” →

Don’t take this personally, Doc…

~ Carolyn Thomas ~ 8 Comments

by Carolyn Thomas   ♥   @HeartSisters

modern-art-1127794_1280 copy Do you remember me telling you the story of my earliest signs of patient empowerment? That story was about the day I decided, at the feisty age of five, to fight back against our family doctor during his house call to our little bungalow on Pleasant Avenue.  My totally out-of-character childhood revolt was launched when I overheard Dr. Zaritsky tell my mother that he’d have to give me a needle to fix what was ailing me – and that he’d have to pull down my pajama bottoms to aim the needle just so into my bare bum. But I was having none of it, as I described here:

“I wept. I screamed. I struggled. I tried to run away from him. I think I may have even punched Dr. Zaritsky right in the stomach – until I finally ended up exhausted, sobbing and humiliated, face-down on the chesterfield, essentially calf-roped into submission by two exasperated adults.

“In hindsight, I’m indeed amazed that I actually somehow found it within my (very sick) little 5-year old spunky self to try to fight off a great big doctor who, in our home, was a man second only to Pope Pius XII in terms of authority and reverence.“

To speak or act so disrespectfully to the wonderful Dr. Zaritsky – or to any physician – would have been inexcusably bad behaviour in my family. But meanwhile, in a foreign country far, far away from Pleasant Avenue (i.e. in the United States of America), the stirrings of an even bigger patient revolution were simmering.  Continue reading “Don’t take this personally, Doc…” →

Which patients does the “patient voice” represent?

~ Carolyn Thomas ~ 26 Comments

by Carolyn Thomas  ♥  @HeartSisters

There are patients. And then there are patients.  Let’s consider, for example, two friends of about the same age, same height, same size, same socioeconomic demographic – each one (in an amazingly freakish coincidence) a survivor of a similarly severe heart attack, admitted to the same hospital on the same day. Let’s call these two made-up examples Betty (Patient A) and Boop (Patient B).

Betty is diagnosed promptly in mid-heart attack, treated appropriately, recovers well, suffers very little if any lasting heart muscle damage, completes a program of supervised cardiac rehabilitation, is surrounded by supportive family and friends, and is happily back at work and hosting Sunday dinners after just a few short weeks of recuperation.

Boop, on the other hand, experiences complications during her hospitalization, recuperation takes far longer than expected, her physician fails to refer her to cardiac rehabilitation, she has little support at home from family, her cardiac symptoms worsen, repeat procedures are required, she suffers longterm debilitating consequences, and is never able to return to work.

Yet despite these profound differences, physicians would still describe both of these women with the same all-inclusive descriptor, “myocardial infarction” (heart attack).  Continue reading “Which patients does the “patient voice” represent?” →

Patient engagement (as described by 31 non-patients)

~ Carolyn Thomas ~ 13 Comments

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)” →