For easy sharing with providers and friends, this post is available at the short URL dave.pt/NewHIPAArights

Last month in “You can ask to see or get a copy of your medical record & other health information” we reviewed an important document [click the image at right] from the Office for Civil Rights that every e-patient should know about – and sometimes carry a printed copy, because many providers don’t know about it. That post’s headline tells the story: you can ask.

Now, as part of the continuing rollout of health reform in the age of “e,” there’s a new video from ONC, the people in HHS who run health IT policy. Here’s a text summary of the items in the video above.
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I made several corrections to the numbered paragraphs, 2:30 ET

Time is short – deadline Tuesday.
Please forward to any individual or association who can act.

For convenience, I’ve tried to condense the issues and actions as much as possible.

Everyone in the U.S. can participate – every individual, citizen or group. Add your voice.

If you have questions, ask in comments.

1. The issues – my view

This was brought to my attention by Leah Binder, CEO of Leapfrog Group in DC, about whom we’ve often written here and on e-patients.net. They’re major fact-based safety advocates – all about the data. And as I’ve always said, we all perform better when we’re informed better.

So to me, hiding data from us is disempowering, and it dis-enables the market forces that reward the best.

The issue here is  some new rules regarding what data our government shows us about the safety performance of different hospitals. In the current batch of proposed changes there are many good things, but three items concern me greatly, and I think anyone who believes in informed consumer choice must act:

1. We need data for individual hospitals, not just the whole company. YIKES! Would you want that in auto safety? Would you want to hear that on average a certain brand is reliable, but have them hide that certain models explode or roll over?? But that’s exactly how it is in medicine. Consumer families need better information.

• This is no small issue – in the example at right, the four hospitals that got grades of A through D are all part of the same company. Do you want that data hidden, so when your relative gets sick, all you know is the company’s overall average??
• Remedy: demand that we continue to see the data for every hospital!
• Note – this isn’t just a consumer rights issue – if the best providers aren’t paraded, how can the market reward them?

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It seems these days internet ads get high click-through rates if they start with “Weird trick.” I’m game. For patient centered care, the weird trick is to think about this:

Listen to what matters to patients (ask them),
and decide that it matters to you.

You’ll see things from their point of view,
and you’ll become patient centered.

I know it’s weird, but think: when patients tell you something’s bothering them, do you say “Sorry, there’s nothing we can do about it”? That’s the hallmark of being disempowered. Or do you do something about it? Or as your team to see if you can?

For instance, noise: I just learned that some hospitals are letting people put up a Do Not Disturb sign! Hard to imagine? It’s in a great Wall Street Journal piece yesterday by Laura Landro.
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So, what is this “patient centered” thing?

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