[kgrin]

My understanding is that PLM very much translates to useable knowledge - just for the pharma and PHM folks who mine the backend (which is how they make money). Notably, this is all quite above-board: it's not a "secretly mine people's private medical details" situation, it's "overtly mine people's private medical details in order to help find treatments for their rare disease"...

[drivativ]

You are right about that - and I think they are doing something really good (and props to them for being really up-front about how they operate) but unless they can really do something to help patients day-to-day, is seems the participation rate will probably always be small and inconsistent, which means a smaller, less-complete data set that will yield less accurate and useful results.

Again, I like the goal and I did try them but it is not a good user experience or particularly helpful on the individual level so even doing it altruistically really didn't last. To get that kind of rich dataset, you need the user to be highly engaged which means they are really getting something out of it and using it for the primarily selfish reason that it helps them.

Having now had a lot of experience dealing with the medical system as related to complex and chronic diseases, I still find myself really surprised by how little the "consumerization of x" movement has impacted it. Per point of the original article, I shouldn't be. The massive bureaucracy, the regulatory capture, and the general politics of the industry are so all-consuming that there is little time or energy left over for the patients. (disclaimer: yes, there are a ton of amazing individuals working in the industry but even they are, unfortunately, really handicapped by the system itself)