Thank you Mandi.
Lucien Engelen
31

Excellent, Lucien, and thank you. Your Patients Included charter was one of the things that prompted me to write this the other day - I fear even those organizations self-reporting as #patientsincluded are only meeting 1 or perhaps 2 of the stated requirements. And that may be generous. Much progress has been made, and there is much still to go. But this is a battle that can be won; it’s not by any means insurmountable. I’m just not sure why it’s so complicated. From the outside, it seems that the only real barrier is a lack of passion, on behalf of the large industry players, for patient participation. If Epic fully sponsored 1 patient per 100 people they send to HIMSS, for example, there would be ~20 patient participants available - and they could help Epic develop new use cases for FHIR apps they should fast-track. That’s just one thought.

I’m trying to understand why we make it so hard on ourselves. Shouldn’t this be easy?

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