Tag Archives: Dave de Bronkart

Dr. Google in the E.R.

25 Nov

 by Carolyn Thomas  @HeartSisters    November 25, 2018

Once upon a time, whenever the good citizens of Belgium experienced puzzling symptoms (let’s say, “twitching eyelids”), they would turn to Dr. Google to find out what might be causing the symptoms. But the Belgian government, concerned about false and scary health information online, came up with a public awareness campaign that warned: “Don’t Google It. Check a reliable source!” This also included a referral link to a government health site that could help to correctly answer questions about twitching eyelids and several other health issues.

This campaign was what patient activist Dave de Bronkart (aka ePatient Dave) bluntly described at the time as spectacularly wrong, insulting, misinformed and wrong-headed. Continue reading

My open letter to “Patients Included” conferences

6 Mar

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:
Continue reading

Which patients does the “patient voice” represent?

9 Aug

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 Patient A and Patient B.

Patient A 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 within a few short weeks of recuperation.

Patient B, 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