Remember why PatientsLikeMe was formed: patients. The need’s still there.
On social media the patient world is abuzz about the news that PatientsLikeMe, a trailblazing commercial patient community (but much more than that), has been acquired by insurance company UnitedHealth. I won’t take time to explain the whole thing; MobiHealthNews has a good summary.
I want to write about the aspects many people are worrying about, which boil down to an insurance company now owning a company that has a ton of patient data. It’s a valid concern, and I view it in its context. (I’m not invalidating the issue — I’m adding perspective.)
Here’s my gut reaction, my first tweet today on the subject:
Remember why PLM was created.
Founders Ben and Jamie Heywood watched their brother slowly die of ALS (Lou Gehrig’s disease), and decided to do something about it. They boldly created something that never existed before: a business with serious funding (a real business) based on a patient community, with the objective of encouraging / promoting / developing cures.
In 2004. Fifteen years ago.
I mean, the Web was only ten years old, there were no smartphones (much less iPads etc.), and it was seven years before IBM Watson won at Jeopardy, much less before they tried applying it to healthcare (and failed). These guys were visionaries about using computers and data processing to improve medicine!
Plus, on a different axis, as I said on Twitter today this was the original #WeAreNotWaiting action. That hashtag is rightly known as the call to action of the diabetes community, which got tired of having industry tell them “Another five years” while the job didn’t get done. People with diabetes created the OpenAPS project (and it works!). The Heywoods created PatientsLikeMe. (I’m drastically oversimplifying but the point’s valid.)
They sold to UnitedHealth because the government made them ditch their Chinese investor.
I’m not taking a position on any of this, but I’ve seen some people jump to the conclusion that the Heywoods lost their souls, or are idiots, because they sold to an insurance company. No, a US government agency forced them to get rid of their large Chinese investor, because it judged that the investor had access to too much data on US citizens. As the MobiHealthNews story details, this forced the Heywoods into a “fire sale.”
The need is still there.
Thomas Goetz, former executive editor of Wired and author of several great books on healthcare (including Decision Tree and The Remedy — a great medical mystery), posted a strong thread last night that sums up my view too:
You may need to click through to read the whole thing, but the final tweet is worth spotlighting:
So I just tip my hat to my friends Jamie and Ben Heywood and everyone at @patientslikeme for being there a decade before the rest of us. They have kept fighting the fight right up to this week. They gave patients a voice in medicine, and changed medicine, too.
Remember the patients.
The question remains, how to move forward with patient-driven searches for remedies. We live in a world full of commercial interests, and none of us can see “under the hood” to see everything that’s going on everywhere. I just don’t want people to assume that because an insurance company bought PatientsLikeMe, it’s all gone to corruption.
Remember the work that still needs to be done. Remember that there’s still no solution for ALS, and beyond that, PLM is now home to over a half million patients — with many diseases. I would much, much, much rather have this work continuing, and under the leadership of the Heywoods and their team.
One p.s. regarding privacy:
Way back in 2009 a couple of different savvy people told me that absolute privacy was already a thing of the past. I found it hard to believe but even then I concluded that it’s useless to paralyze data-driven improvement in the fear that someone might see — or even abuse — the data. Someone might, indeed.
And back then we had no idea what evil this new little company called Facebook might enable, with their reckless, slutty, “who cares who gets hurt” commercial use of the data they covertly collect and sell. See Carole Cadwalladr’s new TED Talk this April if you don’t know what reckless disregard for data abuse looks like. Seriously: watch. 15 minutes.
My two cents:
There is no longer anything we can do to stop that; by using the internet, you’re in that world, period. (Are you still on Facebook?)
You don’t have to use electronics if you don’t want — but don’t base any important judgments on the idea that you’re preventing abuse. Be careful and take precautions, and advocate loudly for doing the right thing. But also advocate for moving forward, the best we can. Because sick people still need help.
