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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?


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