[Reminder: The place to register an official comment to the government is this page on Regulations.gov. Monday May 7 is the last day.]
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New, 11pm ET on May 2: See Regina Holliday’s addition at bottom.

Evening addition: In a comment below, SPM policy chair David Harlow notes that (perhaps in addition to what you do below), to have your comments formally registered, you should submit them on the official Regulations.gov response page.
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The headline above is unusually strong wording, but emails and blogs have been ablaze today with outrage at the comment letter submitted Monday by the American Hospital Association regarding the proposed regulations for Meaningful Use Stage 2. The AHA has effectively said it is neither interested in, nor capable of, giving families the information they need to care for the sick after hospitalization.

And they say Federal rules should support their position. This would utterly disempower the efforts of patients and families to engage responsibly in their families’ care.

We must speak up. This is a call to action.

Perhaps the AHA has unwittingly revealed why American hospitals are inept at discharge planning: they don’t have a grip on this vital information. We already know that 20% of Medicare patients return to the hospital within a month (NEJM 2009). The industry describes this with the delightful term “bounceback.” Families call it upsetting, distressing, heartbreaking.

The issue at hand: current regulations for Meaningful Use Stage 1 (already in force) require that we be given our records within four days, but now the AHA says that’s impossible (“not feasible,” in their words) and they want thirty days.  A month.  (The iHealthBeat article links to the AHA’s 68 page letter (PDF).)

Here’s what that means, specifically: when you or a relative is discharged from the hospital, instead of giving you your information promptly – to inform and empower good home care – they want to be allowed to spend that whole month gathering the information that might let you prevent readmission.

Here are two leading organizations’ posts:

Actions: For individuals, the fastest way is to use the response form on the National Partnership for Women and Families website, to send a message directly to HHS Secretary Sebelius: https://secure2.convio.net/npwf/site/Advocacy?cmd=display&page=UserAction&id=741.  The site will tally how many of us have spoken up. (See also the official HHS response page at top of this post.)

It’s quick: You can use their standard text – just fill in who you are, and you’re done.  It also offers a space to add your own. Here’s what I just submitted:

I am ENRAGED that American hospitals are so poorly organized that they request a “pass” on the vital task of giving families the information they need in order to care for the sick. Nothing could be more disempowering than to say “no” to a request for vitally important information.

It traumatizes and stresses a family – not to mention the patient – when a recently released patient deteriorates and must return to the hospital. It means the hospital failed to treat the patient successfully. Yet the AHA has resisted all past attempts to reduce failed discharges, which we euphemize as “readmissions.” It’s not a “readmission,” it’s FAILED CARE.

Now the AHA asserts that they don’t have it within their power to gather the information a family would need in order to do their part, at home.

This is unconscionable. American healthcare is the world’s most costly and is often far from effective. Give Us Our Damned Data – Let Patients Help!

Obviously there are exceptions – not all hospitals believe what the AHA letter says. But this situation calls for forceful language. We must stand up for ourselves, our children, our elders, or the forces of foot-dragging will have their way again, and we can’t afford it.

This is so ridiculous that in a discussion on the SPM member listserv, Health 2.0 co-founder Matthew Holt mocked the AHA, saying:

30 days, surely not enough time. How about 90?

Or how about releasing data only after the patient sends in their death certificate?

I think  by their weak demand [of “only” 30 days] the AHA shows they’re cowed  by our movement ….

Another said: “Absolutely shameful.  They should be embarrassed to be publicly taking this position.”  I’ve never heard stronger words from highly placed people.

Please, go to the form and add yourself to the number of letters to Sebelius. And to the official Regulations.gov page, to comment directly on the rule.

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Addition 11 pm ET:

SPM member Regina Holliday has just posted about this in a powerful new entry on her blog: Lives not Livelihoods in Meaningful Use. Please read it. Now.

It ends with the most potent slides I think I’ve ever seen on the urgency, the human impact, of these issues – not just the one issue here, but the entire arc of Stages 1, 2 and 3 of Meaningful Use. She is a gifted storyteller.

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