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Apparently it is video week on e-patients.net! Amy Tenderich of DiabetesMine released this call-to-arms yesterday:
But it’s not really a call-to-arms for e-patients.
When the video asks “Who Are You?” it’s clear that the target is companies. And, like Keith Schorsch did, the video equates “patients” and “consumers” (again, not surprising since it was produced in conjunction with a corporation that serves people with diabetes).
Amy has built up a lot of social capital with DiabetesMine and I’m fascinated to see her wielding that influence in the direction of health dot-coms, all the while emphasizing that “patients don’t trust institutions, they trust people.”
I would be interested to hear people’s reactions to the video and how it fits in with “consumer-driven health care.”
Ah! Consumer-driven health care. My pet peeve.
Just do a Google search for it and you’ll understand. One of the first search result is, as expected a wikipedia entry stating “Defined narrowly, consumer driven health care (CDHC) refers to health insurance plans that allow members to use personal Health Savings Accounts (HSAs), Health Reimbursement Arrangements (HRAs), or similar medical payment products to pay routine health care expenses directly, while a high-deductible health insurance policy protects them from catastrophic medical expenses.” I don’t think that’s how we want to be remembered!
Look at all the other search results in that page and you may decide that what we are advocating is VASTLY different from these results (just look at http://www.john-goodman-blog.com/ for a small sample. That is straight from the first result on the search page). Consumerism in healthcare is a term that has already been co-opted by all the entities that we, the e-Patients are fighting every day with the information we collect and disseminate.
First, a HUGE tip of the e-hat to AmyT for this! This is not your ordinary e-patient video clip!
For context and a deeper appreciation of this piece, I urge everyone to read Amy’s original post.
It wasn’t clear to me until I read that post, but now it’s clear: the message of the video puts consumer-patients squarely in the driver’s seat. In a pre-consumer-power world, we took what we were damn well given; now we get to say, and the people funding and creating the systems are starting to listen.
Gilles, I understand that a lot of people (particularly some companies) have co-opted the language of consumerism and are now behaving inconsistent with that. But I have to say, I just don’t have a big problem with the word “consumer.” In my experience, if a company is going to be a jerk to people (treat them as things to be milked or mined), it doesn’t make any difference whether they’re allowed to call them consumers or participants or anything else, or are required to call them Empowered Citizens – if such a company can find a way to disregard or mistreat people (customer or their own employees), they’ll do so.
I humbly propose that a better course is for us to TAKE BACK the word consumers, and bitch about any misuse of our term.
One final note – Amy’s video (about diabetes) naturally focuses on the daily life, needs, and tools of a diabetic, largely interacting with vendors – “Give me what I want. Listen.” Most of what we talk about here is about creating that same relationship with care providers. In both cases, we the people are enabled by the Internet and especially by Web 2.0.
This blog is a perfect example: how much would our voices here be heard, were it not for blogs?
Terms, shmerms. I’m with you, Dave. We as patients finally have a collective voice, and the medical establishment and pharma companies are being forced to listen. This = empowerment. I consider myself very lucky to have been diagnosed with my chronic illness in THIS new age of health consumerism, or whatever you want to call it.
Thanks for visiting, Amy.
An interesting (to me) question to reflect on: is empowerment being listened to, or is it knowing you can speak up in the first place?
I know for a lot of patients it’s a big leap to realize they’re entitled to say what they want or even to have their own opinion. That’s where the “aha” moment happens, then the fun begins.
Perhaps speaking up is step one, and being listened to is step two. “Empowerment-alpha” and “Empowerment-beta,” or some suitably medical-sounding thing, in which speaking up is a necessary precursor to being heard.
Maybe we’ll do blog posts on “What’s all this empowered stuff anyway?” and “Empowered? Where do I start?”
Responding to myself – now I’d say there are three levels of empowerment: realizing you can speak up, being heard, and getting what you asked for.
I wonder if anyone’s ever developed a formal model about it.
Hi, I really like your site about diabetes. We have diabetes in our family and Im worried that my children will get it. My father and my little sister has it :( Hopefully my children dont get it. Cheers