I recently had the privilege of leading a “masterclass” at Stanford’s Medicine X conference. This is one of those situations where you pretend to be an expert, people tell you a bunch of awesome stuff, and then you actually become a bit of an expert. I summarized the current system: researchers invent new drugs, experts give lectures about them, front line clinicians prescribe them to their patients, who do (or don’t) take them in the context of their families and communities.
The question we brainstormed: how might we reconfigure these actors if there were no rules, no laws. Should patients invent new drugs? Should families prescribe treatments? Should communities recruit researchers to work on the problems they want solved?
A few nuggets for me:
- patients, families, and communities seem to be much better at working as a *team* than the health care system is
- community not as the source of answers but as a mechanism for putting potential answers in context, the role of community as translator
- @txtngmypancreas said she might want to collaborate with an inventor, and she’d want to bring her community with her for that collaboration
Which led to this juicy idea: what if whenever doctors or other experts were discussing your case with you, you could instantly invite your community? You could predefine who you ideally want present (two relatives or two hundred community colleagues), give them as much advance notice as possible, and send out the meeting link. They all get to listen. Their questions or comments can go into a queue which a pre-assigned curator from the patient’s community prioritizes for the patient to review in real time, in case she wants to discuss them with the clinical team.
Technically, this is quite easy to build today. Should we?