HealthFrag
Wednesday, February 4 2009
Via Brass and Ivory, I see that HealthCentral has posted a FAQ explaining how they will treat med bloggers following their purchase of Wellsphere, and it looks like they’re going to be fair.
But there’s still a problem. Here’s the answer to one of their FAQs (emphasis added):
HealthCentral believes that the Health Bloggers Network can become a powerful way to help patients and caregivers facing serious health issues to navigate the health system. Insights from those who have faced health crises will be valuable in the upcoming debate over changes in health care more broadly. Over the next few months, HealthCentral will develop capabilities for members of the Health Bloggers Network writing about similar health topics to find each other and organize communities of action around particular health issues, and advocate for changes that benefit patients and caregivers.
“Similar health topics” always ends up meaning the clinical aspects of a given illness. So like everywhere else in the 
blogosphere, people on HealthCentral will end up talking about their specific disease to other people with their specific disease: MS bloggers will talk about MS, diabetes bloggers about diabetes, lupus bloggers about lupus. That’s fine, insofar as it’s helpful, but after a certain point it’s not. If we as patients understand our illness solely in terms of our clinical symptoms, we will see the problems that come from being ill solely in terms of those symptoms and miss the bigger picture. This is how doctors are trained to think, and (I would argue) the main reason it’s so hard to get doctors to understand what it’s like to live with an illness.
As patients, the more narrowly focused we get on the clinical problems – the more we focus on what’s unique and different about our diseases – the less we appreciate what’s common and universal about our lives as sick people. As for me, I’m convinced that most of what’s important about the experience of being ill is independent of my clinical diagnosis, and thus shared by all sick people. So though I have Crohn’s, I don’t make that diagnosis the focus of this blog – and I value the visits and comments I get from folks like Lisa (of Brass and Ivory), or Ilyana (of Beating Social Anxiety), because it shows me there is something shared in our experiences.
I know HealthCentral has to do what its customers want, and most sick people want to know more about their specific diseases; after all, our doctors end up training us to think like they do. But in doing so, HealthCentral will end up decentralizing what could be a large, vocal, and strong “community of action” around all the health issues that aren’t capture in a diagnostic code; a potentially powerful force for “change that benefits patients and caregivers” will instead remain fragmented and weak.
Whatever happens at HealthCentral, I’m still waiting to see the killer app in Health 2.0: the community that helps sick people live beyond their diagnoses.
Thanks for the shout-out!!
I agree with you strongly that we, as patients, share experiences greater than symptoms and diagnoses. When I started my blog, I didn’t focus on the diagnosis (or rather multiple diagnoses). Instead, I focused on health policy and the problems I experienced within the current system.
My largest complaint had to do with health insurance being vastly different if you were part of a group or a self-employed individual. It was only through having MS that I discovered the horrendous holes and pitfalls in my insurance coverage and the dwindling safetynet programs.
I’m certain that I’m not the only patient living with chronic illness who has prescription coverage limited to $1500 each year. Hold that up against the cost of my drugs which approaches $30,000 each year. Unfortunately what this does is serve to diminish my sympathy for other patients who complain that the cost of their co-pays increased from $25 to $50 (just using those numbers as an example).
When I read that same answer above, my first thought was ‘cool, so finally someone is thinking of the bigger picture.’ It was the “communities of action” which caught my eye, maybe a bit like Care2.com which is organized around causes and has a way for people to join forces with petitions. BTW, Care2 recently added a Health Policy section which a friend of mine writes for.
Perhaps what this means is that more ‘networking’ will have to take place and perhaps it will be up to the patients to make that happen. But once I started talking about my MS and connecting with other MSers, I haven’t ventured out as much to get around. LOL.
BTW, I really LOVE your new badge!!
Your post is right on … and, I agree, your badge is very cool.
People, not patients!
Christine
@Lisa – I’m one of those patients with decent insurance and low co-pays; if we focus on that alone, you and I don’t have much in common. But that’s not all there is to it; I have a lot of sympathy for you and others in your situation, more so folks with no coverage at all. I have a lot of anxiety – and I’m sure lots of folks in my situation do, too – about losing coverage. Anything that helps you pay your bills is also going to help me not worry about mine; let’s get there together. My point is that there are any number of issues like that – things we experience or fear as sick people – that we can work together to fix. But first we have to be willing to look past our diagnoses….
@Christine – welcome, and thanks for your comments. Just FYI: I fixed the HTML in your URL, so folks can click through to your blog.
Excellent post and If I may, I would love to earn one of your badges.
I’m on the fringe of the online medblog community – paying more attention to my cathartic patient blog writing than much else. I must say that the grouping of patients by illness doesn’t help me feel anymore integrated. I’m undiagnosed.
Thanks for this post.
-Q