Aliya Sternstein writes for NextGov, a site devoted to “technology and the business of government.” We spoke last week for her piece about the White House’s use of social media. There are some people who, when you speak with them, the conversation goes to new places. This was one of those times.
It was a provocative talk, because although “everyone knows” the Obama administration has mastered social media, there’s a real question of whether we out here actually use those blogs. And it had never even occurred to me to go there – I have about six zillion other blogs I want to keep up on, and besides, to me social media is all about conversations, not one-way publishing or one-way reading. I commented that the thing about the administration isn’t just that they publish, it’s that they seem to listen.
Anyway, when Aliya published another piece today, Administration urged to engage public on e-health records, I took a look. She spoke with Michael Painter of the Robert Wood Johnson Foundation, and the famous Brian Klepper of Healthcare Performance, inc. And something Brian said stuck in my craw:
In my view, there are parallel universes of health care reform discussion. One is what everyday people are saying and thinking. . . .And, yes, the White House hopes people will visit its site on reform and weigh in. The core problem here is that there is no political power center for regular people to glom on to health care reform.”
(Emphasis added.)
Think about that: the only people who will live or die, depending on how reform goes, have no power center in Washington.
It took me right back to Craig Stoltz’s excellent post last night about the new Declaration of Health Data Rights: Declaration of Health Data Rights: Aux Barricades!
Craig’s point is “The most visible and active ‘stakeholders’ in discussions about HIT so far have been … commercially self-interested players who may not [or, to be fair, may] have patient rights … top-of-mind.”
As I often say, I have nothing against business; I’m in business. But I assert that something is terribly broken if we – the ones who stand to live or die depending on this issue – have no power center to “glom on to.”
Think about it: all we hear about from DC is what the AMA wants, what pharma thinks, and so on. Where the hell is the voice of the patient?
Dave, it’s certainly an important point, and I agree.
I do think that the Consumer Partnership for eHealth (CPeH) has become an important and influential voice for the interests of patients and families (although I admit that “regular patients” are not part of the daily work of the coalition). CPeH is a coalition of many consumer advocacy organizations and non-profit organizations focused on the consumer-facing side of health information technology — and, really, for better, more efficient health care more generally.
If you’re interested in finding out more, start with the June 16 post at http://www.IxCenterBlog.org.
Josh, yeah, I realized that the way I worded it, it rather ignores the good work of parties like the National Partnership for Women & Families, the Center for Democracy & Technology, the National eHealth Collaborative, and many many other groups. I love those people!
And yet we’re left with the reality that Brian mentioned: we the people are simply not at the center of the discussion. We’re mentioned as detached victims: the faceless 48 million with no coverage, etc etc.
Much to think about here. Grousing gets us nowhere. Except sometimes it can raise awareness. But IMO there needs to be constructive suggestion, *creating* something. That’s part of why I like the Declaration: it creates a new platform from which to view things, and to see old things from a new perspective.
I have another note to write tonight after some more thinking about a private note I received overnight. But for now, it’s off to the marketing data day job.
Well, I’ve done a lot more reading and thinking since getting home tonight. Here’s what I have to add now:
There’s a lot to be learned by reading Brian Klepper and David Kibbe’s June 10 post on The Health Care Blog, The Health Industry’s Achilles Heel.
After you absorb the intense information in that post, about how sick and dysfunctional and underperforming the system is, then read the comments. I didn’t see a single one of them discussing that the system is failing us.
I have a good friend who thinks deeply about why things are the way they are. Years ago, talking about a situation far from healthcare but very similar, he said “Dave, this is what you get when you have an aristocracy: people who are living off other people’s money, and who are in a system that’s so bloated that they don’t have to generate any real value. They end up fighting with each other, ignoring the people who created their wealth, even if those people are starving. It always collapses.”
Dave,
glad you added that last comment. The fact of the matter is, the debate on health care is not different from that of civil liberties, justice, food, etc. etc. in this country.