Update (June 9th, 2009): Thanks to ReliefInsite for featuring this post on their Press page!
ReliefInsite is an interesting service that aims to facilitate patient logging of pain and connection of the information with health care providers. This is a brief overview of how it works and a commentary on my personal experience with fibromyalgia.
Here’s a subject near and dear to my heart.
Let’s talk about pain.
Patients perform real-time pain mapping, monitoring, and analysis. They answer basic questions such as “Where is your pain?” “How would you describe it?” “What were you doing when you experienced it?” At the end, they can print off the summary and bring it to their doctor.
Healthcare providers can refer patients to ReliefInsite and access their reports.
I grew up with pain.
When I was a kid, pain was hard to understand. Scrapes and bleeds (see: the time I cut my hand open riding a bike and was forced to wear leather mittens for the entire summer) were typical, part of the theatre of experience. But chronic pain for an eight-year-old was just weird.
No one could figure out what was wrong with me. The aches manifested in almost every joint and muscle of my body, and only worsened through my teens. Now I’m a writer; I love to tell stories. However, this drama I could have done without:
- the slightest air currents would make my limbs ache when wearing shorter clothing like t-shirts and shorts
- all joints in my fingers would ache and burn for no reason at all
- I had to get up as soon as I woke up in the morning or be rendered incapacitated by lower back pain
- on multiple occasions, rainy weather would induce so much pain I just curled up in a ball and cried
I could have also done without the dramatis personae that it inevitably implicated.
Friends: You’re getting to be a drag at parties.
Family: You’re getting to be a drag.
Doctor(s): You’re making this up (or might as well be since we can’t do anything about it).
Now watch the video on ReliefInsite.com.
I’m not alone?
Finally! Back then, I really thought I was delusional with all this pain talk.
My first rheumatoid arthritis specialist was a really nice guy. The exam consisted of his applying pressure to various joints and muscles, and asking me if it hurt, followed by discussion of my daily routine. A-plus. The problem was that I was still confused about what pain was, what I was being asked to describe exactly. I mean, if someone jabs your knee and asks you if it hurts, of course it does. My repeated attempts at getting clarification were brushed off. Finally, he told me that I should try more exercise because, “Today’s women are such go-getters.”
A pattern began to emerge. Subsequent doctors always asked me the same questions, ostensibly the right questions, but didn’t seem to believe my answers. I felt like I was being labeled the girl who cried wolf and it was frustrating. It occurs to me now that if I had visited them with a ReliefInSite summary it might have given both the physician and me a common reference point.
Yes, it’s hard to explain to someone what “stiffness” actually feels like, but it helps to have a common pool of adjectives at least. “It’s something different from ‘aching’, ‘jabbing’, ‘numbness’, etc.” “It’s been happening mostly on this side of my body and lasts for this long.” That’s accountability. That’s being a good patient. But correct me if I’m wrong — my teenage self (probably most teenage selves aren’t) wasn’t able to think of that kind of action all by myself. I expected the doctor to direct me if he/she needed more information, not send me away with the vague assertion of “exercise”.
FYI, as an adolescent, I was given the diagnosis of fibryomalgia – a “diagnosis of exclusion” – and nobody even bothered to tell me until the report literally fell out of my file by accident.
So maybe both patient and doctor could use something like this. I’m not saying it’s SUPERAMAZING or that I’ll even use it (I do have an account now though and took it for a spin — generally impressed), but it’s a step in the right direction.
Yay for Patient 2.0. I knew it was time for an upgrade.
A new perspective.
As far as I’m aware, this ReliefInsite is a couple of years old already, so it’s nothing new. However, it’s new to me and has caused me to shift my thinking a bit. My initial thoughts about Medicine 2.0 were more Doctor 2.0- or Health Care Professional 2.0-directed. Stream of thought went something like this:
- The potential of social networking will enable HCPs to easily share opinions, talk about current research, bridge geographic and social gaps. Facebook for docs.
- Smarter medical device design using human factors engineering principles, working in teams right in the hospital. Here in Toronto, we have the Center for Global eHealth Innovations, of which I’ve helped organize multiple tours for CUBE.
- Telemedicine — that’s something I don’t know much about — but you know, remote consultations and procedures.
It’s exciting. But lately I’ve been thinking about how I would use Medicine 2.0, in the capacity of Patient 2.0. The above tools are most relevant to the technical specialists, who the average patient is probably intimidated by, and even more so when said specialists come up wielding this Medicine 2.0 — so what can the rest of us get out of it? Like, right now?
Make it work for you.
Well, I get excited about navel-gazing. We all get excited about
our ambitions (hopefully).
I’ve used DailyBurn for tracking fitness. I love reading about what my favourite eBay sellers wear every day via RSS. Last.fm provides tons of stats about my music listening trends. It’s all about a daily information feed.
Not everything’s useful all the time, but are you really going to remember that you had a twinge of pain in your right knee after working out on January 11th that ended up lasting for a month with such-and-such descriptors if you don’t record it somewhere? Now hit print and discuss it with your doc.
I think it might be productive. Thoughts?
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