[drivativ]

One way this industry may get nudged significantly (disruption is too strong a word and not exactly a great thing when dealing with peoples health) is to approach it from the outside the system and come at it from the consumer health angle. Yes, it is far more limited in many ways as you can't build a system a hospital can integrate but there is still a lot that can be done.

20-30 years ago, if you had a problem, you went to a doctor and that was about it. Now, people are more likely to choose to (or forced to by cost) seek alternative practitioners or at least partially take matters into their own hands (independent research, dietary and lifestyle changes, etc). These will usually be people who are not really getting helped by the system and are probably facing issues where lifestyle is a big factor (autoimmune issues, diabetes, obesity, etc). If you can successfully help that group of people where the system has failed to, then you may start to see some real changes as most people ultimately will (eventually) gravitate to what actually works (yes, I am an optimist).

Of course, as another commenter mentioned, we tend to be terrible at doing things now to benefit our future selves, but I still believe technology could play a big role in helping with that and the current options, like wearing a fitbit, are barely scratching the surface, mainly in that they aren't yet doing much to prove their benefit to the consumer or obviously help them day-to-day. That is a really hard task when health changes occur over long timespans but at least it is just hard-hard, not EMR/politics-hard.

[ScottBurson]

Maybe something like this? https://www.patientslikeme.com/

[drivativ]

I have used them and they are definitely on the right path but they haven't yet got past the point of just showing a lot of graphs and comparative statistics, etc. As always, it comes down to translating data to useable knowledge, which we as an industry are obviously trying to figure out across pretty much all verticals

[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)