Thread by @ePatientDave

@pheski @KDrum @PHEski Since my glaucoma diagnosis a year ago this has been a major complaint. (short thread) First: epatientdave.com/2021/12/21/why…

@pheski @kdrum I was aggravated by how hard it is to do this essential thing (instilling eye drops) (why haven't they fixed this???), then further aggravated a few months ago upon discovering this 2017 @Marshall_Allen @Propublica expose of the eye drop business. propublica.org/article/drug-c… 2/

@pheski @kdrum @marshall_allen @propublica The solution to this, and much more, came when last year I found a solid e-patient community, FitEyes. Here's a grab from my first link above: 3/

@pheski @kdrum @marshall_allen @propublica They told me about two applicators that are so simple it makes me want to tear my hair out: why don't docs tell us about this??? The first (the one I use) is MagicTouchEye.com. Screen grab: 4/

@pheski @kdrum @marshall_allen @propublica YES IT's THAT EASY AND IT WORKS. Here's me doing mine just now. (Great timing) NO MORE TILTING THE HEAD BACK. The drop sits in the little cup at the tip then jumps to the eye at first touch.

@pheski @kdrum @marshall_allen @propublica A similar product, which I find less convenient, is SimplyTouch, which claims to let you instill drops without even removing your glasses. 6/ amazon.com/Simply-Touch-E…

@pheski @kdrum @marshall_allen @propublica Re the "Arg!!!" factor, it's not like this is a new issue: this 2012 article (ten years ago!!) in @JOGJournal said nearly 9 out of 10 patients were unable to dispense eye drops correctly! pubmed.ncbi.nlm.nih.gov/21336146/ 7/

@pheski @kdrum @marshall_allen @propublica @JOGJournal Honestly this is a perfect example of why the shift to #PatientCenteredCare is so important: scientists are acculturated to build on the science (molecules & tissues) which is good but if *patients* had a voice in what they should work on next, improving *practice* might rank. 8/

@pheski @kdrum @marshall_allen @propublica @JOGJournal And that in turn is why good patient communities are an invaluable adjunct to the best science, which we call Participatory Medicine (see @S4PM). Let patients help - stop telling us to stay off the internet, if you (the professions) aren't going to listen to what WE need. /end

@pheski @kdrum @marshall_allen @propublica @JOGJournal @threadreaderapp unroll