Finding patients like me

March 16, 2010 3:47 AM

Do you have a life-changing medical condition? Patientslikeme (mentioned previously in a 2008 post on mood conditions) is a way for you share information online with other people who have the same condition. Some of the conditions with groups established already are epilepsy, depression, and Multiple Sclerosis. Started by 3 MIT engineers who had personal experiences with ALS (Lou Gherig's disease), the site is funded by partnerships with healthcare providers who have access to anonymised data about the member base. The stated goal in their Openness Policy is to speed up the pace of research and help fix the broken (US) health system. The Privacy Policy has a plain-English description of what happens to information that members share.
posted by harriet vane (15 comments total)

I don't know if I'll join, but I just checked out the epilepsy page and was extremely heartened to see the following:

"Top symptoms: Memory problems. Problems concentrating. Fatigue."

OH THANK GOURD IT'S NOT JUST ME.

I do take comfort in seeing that these are not just my own personal little windmills that I keep tilting at.

Not sure if I'll join - potential employers have already been able to sleuth out that I have epilepsy. I don't need anyone's web-crawling skills to uncover exactly what medication I take and such.
posted by grapefruitmoon at 3:58 AM on March 16, 2010

That's a cool idea, especially for people with rare diseases.
posted by pracowity at 4:18 AM on March 16, 2010

I'm impressed with how well thought-out PLM is. It ain't perfect, but it's very good. Thanks for posting this.
posted by Mister_A at 4:43 AM on March 16, 2010

I'd like to see some of my various listed, and honestly some of my non-rares as well. But I am also feeling a bit like gfm, not sure about any of the online health records initiatives - not sure that it's a good idea to share details like that.

We've not had good records as global communities of respecting the trust in privacy placed in us by folks who have bought into public health (or other kinds of) records.
posted by kalessin at 5:59 AM on March 16, 2010

I can't tell you how much these sites help. The only concern is the medical partnership. Hopefully they won't interfere too much. I used to go on MedHelp a lot during my infertility treatments. It was great to have a "partner" who would understand everything, you could ask questions, and you could root (or cry) with. Thanks for the post.
posted by stormpooper at 6:03 AM on March 16, 2010

I probably wouldn't have posted this as an FPP if it hadn't been for the plain-English privacy notice. It sort of matches the openness they're asking for from members. I'm not sure if it's enough, I'll leave that assessment to people with more legal experience, but it's evidence of goodwill at least.

And yeah, I'd be interested to know what any experts think of the potential for data to be un-anonymised, or for people to be linked back to their accounts at this site. It'd really put a dampener on members' willingness to join or share.
posted by harriet vane at 6:42 AM on March 16, 2010

There's a good TED talk about patients like me, explaining the site and its uses along with telling the story of the guy whose disease inspired it. It looks like a great idea with very good execution.
posted by metaBugs at 7:19 AM on March 16, 2010 [2 favorites]

At first I thought Sally Fields had become an M.D.
posted by mecran01 at 7:25 AM on March 16, 2010 [1 favorite]

I love that privacy policy. Not just how well-written it is, but that they tell you when they changed the language and what they changed. I don't know that I'd use the site if I had an ailment they cover for the internet privacy issues everyone mentions, but it's not for lack of faith in their privacy policy.
posted by immlass at 8:02 AM on March 16, 2010

I'm all in favor of their privacy policy, I just feel like I should point out that in my particular industry (childcare), I've had things traced back to me that I had no idea that anyone could access. Parents hiring nannies apparently aren't above also hiring people to do some SERIOUS snooping.
posted by grapefruitmoon at 8:38 AM on March 16, 2010 [1 favorite]

Still no pulmonary hypertension community. And when I searched for the disease, they said they had twenty four posts about it but I'd have to join to see them. In order to join, I had to lie and say I had a disease that I don't have. Now that I'm in, the number of posts about pulmonary hypertension has shrunk to one and that one only contains those two words. So in order to make PLM be relevant to me, I have to contract one of their diseases. I think I'll just wait for them to catch up.
posted by faceonmars at 9:29 AM on March 16, 2010

Gonna join, looked up my lady friends optic neuritis, she could really use this info.
posted by jara1953 at 9:50 AM on March 16, 2010

I've just gotten some super-crappy medical news, but none of it's got a patientslikeme community yet, and the existing communities include things that are likely to be ruled out for me. Like faceonmars, I guess I'll wait. (PH is one of mine so I was hoping for that to be there.)
posted by catlet at 2:29 PM on March 16, 2010

This is a wonderful resource - not only is it broken down by disease, but also symptom! So while my BFF Pet Disease, Spastic Paraparesis, isn't listed, Spasticity as a symptom is. And I can read about it on a non-sentimental, non-judgmental, analytic space.

I also noted that one person listed 'Segway' as a treatment for Spasticity. I should see if my insurance plan will go for that...
posted by spinifex23 at 4:52 PM on March 16, 2010

Is there a way to start your own community or do you have to wait for them to set it up?
posted by harriet vane at 9:59 PM on March 16, 2010