Tag Archives: ePatient Dave

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

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

“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?”

Continue reading