[Reminder: The place to register an official comment to the government is this page on Regulations.gov. Monday May 7 is the last day.]
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.
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:
- Center for Democracy & Technology (which happens to be the first organization ever to invite me to DC): Hospital Association Fights Digital Data Access for Patients
- National Partnership for Women and Families: Don’t Let Them Destroy Patient Protections in Health IT!
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/
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.
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.
Why not reverse the argument?
Instead of…. “we can’t release for 30 days until all the documentation is ready”, why not “we will release promptly (within 24 hours) in order to motivate contributors to quickly complete and make available their pieces of the summary record”? In other words, shine a light, through quick release, to identify missing data that should be more quickly made available. And in the process, let patients help organizations to identify their information bottlenecks.
It is typical for any industry that is confronted with disruptive change to respond with fear as the AHA has.. We aren’t in fact asking for even records within 3 days but to be treated like any other part of the care team with time access to our health information in order to improve quality, safety and outcomes.
We as part of the care team need the same access that the surgeon and the medical assistant have not 3 day or 24 hour or I can’t imagine 30 days. Even if MU doesn’t reach this goal some providers and health care systems will and that will drive their business in ways that regulation never can.
Go Dave! Shine the light!
What’s YOUR comment, Vince??
“Go Dave! Shine the light!” doesn’t qualify as a comment? :)
You might remember that I tweeted you a while back asking: “Could the ePatient community help shine light on Epic as wrench in gears of data exchange?”
You answer was something like — first educate me on what’s going on.
The AHA has just done a lot of that work for me.
For over a decade, hospitals have been buying enterprise centric software. i.e., software that is NOT patient centric.
When HITECH passed in 2009, the plan was clearly laid out that hospitals would be expected to exchange data with patients electronically. They were put on notice.
EPIC (and a few other hospital vendors) are still dragging their feet on interoperability. Their software is designed NOT to be interoperable.
NOW is great time to make a stand and shine the light on hospitals’ lack of cooperation in sharing information with patients.
How do we get Oprah and Andersen on top of this?
Action: If you want to submit a comment on this issue, please do it via the link below, which will ensure that it is considered by HHS as part of the formal rulemaking process.
Writing to the Secretary or signing on to an online petition may get it off your chest, but this is the only way to have your comment tallied up as one of those in favor of making clinical info available to patients as soon as it is available to any other member of the team.
S4PM comments addressing this issue and others are being finalized and will be posted once they are in.
Thanks, David – I updated the post, right at the top.
Can’t wait to see what you guys are drafting! This news puts a sharper edge on it.
I submitted my comment to the site in your addendum, Dave. Thanks for bringing this to our attention. I told them I needed such access to protect my mother from the medical system – sad but true!
Submitted my comment. Thank you!
I fear the government will give in to AHA…..makes me sick.
Everyone should pass the word to friends and colleagues to ensure that comments are submitted.
Helen, not sure why you fear the government will give in – this administration’s regulators (at ONC, the Office of the National Coordinator for health IT) has been pretty darned patient-centric.
One great sign of this entire administration is how open they’ve been to citizen comments. And you must admit, the industry may have more money than we do, but we sure outnumber them in voices.
Legislators are prey to lobbyists who can make their lives hell … people in the executive branch are never paid as highly as they would be in industry, so they’re there because they’re dedicated. (Or maybe they’re corrupt, in some cases, but the people I personally know in this administration are darn-straight “What about the patients??”)
So we should raise our voices. Then those people get to point to “Look, we got 843 strongly worded comments, saying things like x y z.”
Lordy, lordy. We can’t easily go TO Washington to the meetings, but they give us a WEB SITE, of all things, where we can even upload an attachment.
(The AHA uploaded a 68 pager.)
I don’t see how you think we have more lobbying power than the AHA. This is the very problem with getting government so involved.
* The gov’t creates these regulations and laws that impose costs on businesses.
* The businesses in turn put them on the consumer.
* Then the businesses lobby the government to be exempt which creates a nice crony capitalist playground.
Case in point: McDonalds and 29 other businesses got healthcare waivers under Obamacare: http://goo.gl/vLaK
Big Business is a result of Big Government (aka Facism).
Dave thank you for helping us stay in touch with issues that we otherwise would not be aware of. Your leadership is an inspiration.
I submitted my opinion on this important issue.
Thanks, Marianne, but credit for this goes to the people who drew it to the attention of others and me this morning.
It started with Deven McGraw and Christine Bechtel, who said early today that they’d be blasting the AHA’s position in blog posts. Then SPM superstar @ReginaHolliday sent out another Paul Revere email, which spread quickly to the SPM members list. The discussion got hot quickly, and we were off to the races.
It is so exciting how many people are weighing in on this! We will need every voice. I urge individual hospitals who disagree with AHA’s position on this issue to let patients know who you are.
I just went back to the 68 page PDF of the AHA’s letter on this issue, and noticed this priceless item. I said on Facebook:
30 days actually seems very reasonable to me.
Hi Trish – reasonable from which perspective? The family’s, or the hospital’s?
Our Dutch friend Lodewijk Bos, chair of ICMCC, asked that I post this, from an email:
“I would have used a whole different “repertoire” of expressions. You are very decent in your blog. I would have screamed hell.
“I think this shows that the American bastion of healthcare institutions is noticing that someone/thing is shaking up their basics in a serious way and are trying to cling to their old prerogatives to save the (in their eyes) sinking ship. It’s an act of desperation. If history had not given them (and their pharmaceutical alliances) such an immense, political power, you would consider it a joke. Now it is an offense, to both the patients and to those who try to innovate the way we treat human beings in need.”
He just blogged his thoughts, as an overseas observer, here. Powerfully reasoned and well written (except that I don’t understand a couple of the words…:-))
Sent my comments today to both places, adding the following paragraph to the one provided.
As a patient with a chronic illness with a kid also suffering a chronic illness, the proposal to delay the release of electronic health information records (my records) by hospitals is outrageous. Taxpayer money is funding this program. Let’s be sure patients and families get the real benefits they both want and deserve. Also as as a researcher, this sort of measures will continue to decrease healthcare access and quality to underprivileged communities, increasing healthcare disparities, etc. Stop the non sense disempowerment of patients.
Spot-on comment from @PNSchmidt of Parkinson’s Foundation, on my Facebook page: “At my direction, my organization just signed on with the Coalition for Better Care on a letter saying that patients should have access within 24 hours, not 30 days. I suggest that all our comments say that any review by the provider organization is unnecessary and we should have the same timeline for access that doctors do: immediate.”
Like Regina’s husband, our son suffered needlessly due to our inability to access his health record – read about Our Scary Time in the PICU
Pardon if I duplicate a comment I just added on another post:
Twitter friend @ElinSilveous just tweeted this:
“The AHA strongly supports patients’ access to their medical information http://bit.ly/K4JOFJ
It’s a one page PDF where the AHA says, incredibly: “The facts: …. Currently patients are getting their information quickly. …”
(They published it Thursday on their press page.)
Not a plug for any specific EMR vendor, but I can only speak from my own experience. I have worked with the Cerner system in various capacities for several years. They have a patient portal called IQHealth, which some of their clients have implemented. IQHealth provides the ability to download a CCD with a lot of your patient data. It’s not the entire EMR content, but it has many of the key pieces of data such as allergies, meds, problems and a lot of results. Not all clients have implemented this but Cerner has made it possible.
So, there is at lease one vendor who is trying. I don’t have experience with enough others to know what they are doing.
I think it is more complicated than just the vendors capabilities. If enough hospitals want a particular function or feature, they build it.
Having just created the CCD feature for our PHR product, I can tell you that one barrier is the lack of good standards for how to create the CCD and what vocabularies to use for the data that populate it. HL7 has created an updated CCD definition in their Consolidated Clinical Document Architecture, or CCDA, which is out for balloting this spring. ONC has specified some vocabularies to use for interoperability but there are still challenges there too. So, I think that part of the problem for both hospitals and vendors is that the target is still moving. That makes development very hard.
Reminder: The place to register an official comment to the government is this page on Regulations.gov. Monday May 7 is the last day.