Thread by @ePatientDave

@BeLikeLight @RemRunner @TEDTalks @TEDx Hi Julie! I'd be happy to discuss the potential blind spots in that earnest perspective. For starters, if they talk to *doctors* all day, does that mean there's no value going to conferences where doctors speak?

It's not a snarky question. Really think about it. (cont'd)

@BeLikeLight @RemRunner @TEDTalks @TEDx There's a chance the implied message is "I doubt there's anything new I could learn from any patient I haven't met." That is (honestly) a sure-fire way to become out of touch and get blind-sided.

@BeLikeLight @RemRunner @TEDTalks @TEDx I'd be happy to engage in a dialog about specifics. Has this doc heard about what I call "superpatients" - patients like @Doug_Lind_Say who designed his own surgery, @HugoOC who hacks his ICD, the whole #DIYPS / #WeAreNotWaiting T1D community, or T1D pts who pre-bolus, etc?

@BeLikeLight @RemRunner @TEDTalks @TEDx @Doug_Lind_Say @HugoOC Then there's @KimGoodsellROVA who found the unifying genetic cause of her TWO rare conditions (her cardiologist @EricTopol was surprised!), @JillViles who identified the link between her conditions.

If the doc is open minded this cascade forces "Wait, what??" wondering. /contd

@BeLikeLight @RemRunner @TEDTalks @TEDx @Doug_Lind_Say @HugoOC @KimGoodsellROVA @EricTopol @jillviles Such moments often produce scoffs of "Well, but MY patients aren't like that." PRECISELY.

A TED from another superpatient, Tal Golesworthy, who invented a new way to repair aortic root problems (including his own) that's now been used in hundreds of pts ted.com/talks/tal_gole…

@BeLikeLight @RemRunner @Doug_Lind_Say @HugoOC @KimGoodsellROVA @EricTopol @jillviles The above are only pts who created genuine scientific value in their cases & others, which forces most docs to rethink their doc-pt relationship.

Re research, here's @BettinaRyll, whose experience when her husband was dying taught her that researchers should LIST to pts.

@BeLikeLight @RemRunner @Doug_Lind_Say @HugoOC @KimGoodsellROVA @EricTopol @jillviles @BettinaRyll I hope the doc will have enough confidence in top journals to read "The Rise of the Expert Patient," just out this past Monday.

So the question is, NOW what is it the doc feels they couldn't learn from patients, and on what basis do they still say that?

https://twitter.com/AndreaAnampaG/status/1508538594616619015

@BeLikeLight @RemRunner @TEDTalks @TEDx @Doug_Lind_Say @HugoOC @threadreaderapp unroll

@BeLikeLight @RemRunner @Doug_Lind_Say @HugoOC @KimGoodsellROVA @EricTopol @jillviles @BettinaRyll *LISTEN to pts (not list)

@BeLikeLight @RemRunner @Doug_Lind_Say @HugoOC @KimGoodsellROVA @EricTopol @jillviles @BettinaRyll Then there's this - head of mental health at NIH changes career after listening to a patient (dad of sick kid) question their priorities; realizes the dad's right. Great article (and great listen on NYT The Daily podcast). Listening to patients.

https://mobile.twitter.com/MichaelLouisPl1/status/1496170677891706881

@BeLikeLight @RemRunner @Doug_Lind_Say @HugoOC @KimGoodsellROVA @EricTopol @jillviles @BettinaRyll Then there's @SharonFTerry, one of the OG "superpatients" - back in the 1990s. Medical background? College chaplain, back then. But why listen to her? :-)

Honest: the question is, do you want to learn, or stay expert in your original training? ted.com/talks/sharon_t…