4 posts tagged “patient sharing”

Patient Sharing: A Concept That Is Finally Becoming Obvious

Posted May 26th, 2011 by

Susannah Fox, Associate Director of the Pew Internet & American Life Project

Susannah Fox, the Associate Director of the Pew Internet & American Life Project, recently posted a blog entry entitled “Peer-to-peer Healthcare: Crazy. Crazy. Crazy. Obvious.” that is near and dear to our hearts here at PatientsLikeMe.

In her post, she defines peer-to-peer healthcare as follows:

“Patients and caregivers know things — about themselves, about each other, about treatments — and they want to share what they know to help other people.  Technology helps to surface and organize that knowledge to make it useful for as many people as possible.”

Sound familiar?  She goes on to describe where this idea of patients sharing knowledge with each other fits in the lifecycle of ideas (or The Natural History of a New Idea).

All of this research is moving peer-to-peer healthcare along the new idea scale.  In fact, I’m having fun watching people’s reactions (and mine) when I describe these new studies:  from indifference (bummer, they don’t get it), to puzzlement (OK, we’re at least up to ‘odd, but unproven’), to excitement (oh good, let’s talk). It speaks volumes to me that the Wall Street Journal covered the PatientsLikeMe [ALS] study, for example, and other major news outlets did not.”

Want to hear why she thinks PatientsLikeMe and others are moving the concept of patient sharing from “crazy to obvious” – and how this all could affect the future of science?  Read her full blog post and weigh in with your own thoughts in the comments section.

PatientsLikeMe member lscanlon


Multiple Sclerosis Awareness Week: Interview with Gardener

Posted March 10th, 2010 by

It’s National Multiple Sclerosis (MS) Awareness Week.  There are more than 17,400 patients in the PatientsLikeMe MS community sharing data about their symptoms, treatments and side effects, lifestyle modifications and overall health outcomes.

In honor of the week, and March being National MS Awareness Month, we will be posting interviews with MS patients and nonprofit partners on the blog each week to help raise awareness about real-world experiences with the condition and initiatives that are keeping the research going.  Today, is our interview with gardener, one of our very active patient members who joined the community back in 2007 just after it launched.  She recently answered some questions from Amy Morton, a member of our marketing team here at PatientsLikeMe, about life, living with MS and being a member of PatientsLikeMe.

2166 (Amy) What’s on your mind these days?
3203 (Gardener) Right now, at this moment, my cats, because they’re begging for food, and being very loud and persistent.

In general, I’ve been focusing on violin and accordion performances coming up in April. I’m playing dance solos. It should be fun. That, and figuring out something to make as a demo for this month’s sewing group. I went over two years of having something new at every meeting until October of last year, then got whacked by a bout of depression.

It’s lifting, and things are fun again. My friends aren’t annoying anymore, either. Come to think of it, everyone was kind of annoying during the worst of it. At the time, I told a friend I wanted to curl up in the bottom of my closet. She suggested bringing along a fluffy blanket and a pillow.  That wasn’t an annoying suggestion.

2166 (Amy) What do you enjoy most about winter?
3203 (Gardener) Watching my dog play in the snow. He likes the deep fluffy snow we’ve gotten recently and shows such joy running through it. The lower temperature is nice, too, as is meeting people for whom this is their first real winter. Seeing others enjoy things like snowball fights so much gives me a better outlook on winter. I have never been good at throwing, so I just watch.
2166 (Amy) How do you keep perspective with your condition?
3203 (Gardener) For a long time, I’ve tried to keep in mind that the only constant is change. That outlook helped a lot when I was diagnosed. This is no one’s fault, it’s not a lesson, and it didn’t happen for a reason. MS is a random thing. It’s hard to take random things personally. Also, I’ve had friends go through refugee situations. After hearing their stories, it’s hard to think of this as more than an inconvenience. Yes, MS sucks, but there are many things that are worse.
2166 (Amy) Share why you decided to make your profile public.
3203 (Gardener) Something that I’ve found frustrating in general is how few things people really discuss. By having the profiles open, you can see what others are taking for symptoms, and how they like the treatments. You can also see what kind of results people are getting with what they’re doing. It would be hypocritical to use a resource like that and not return the favor. Also, PatientsLikeMe feels like a safe place to share.
2166 (Amy) Thanks for sharing, Gardener!