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Hugo Campos has major arrhythmia, goes to ER, wants his data even more now

e-Patient Dave | May 10, 2012

SPM member Hugo Campos has had much coverage here and in the media (NPR, SF Chronicle, San Jose Mercury-News) for his desire to see the raw data coming out of his implanted defibrillator. The vendor, Medtronic, feels that its responsibility is to give Hugo’s doctor the data, to understand what episodes happen in Hugo’s heart, to which the device responds by shocking him if necessary.

Hugo, meanwhile, would prefer to understand what‘s happening in his heart so he can avoid episodes. (Imagine someone preferring to stay out of medical trouble, instead of being rescued.)

And when something happens, large or small, he’d like to know what, so he can understand his body and do everything in his power to live in a way that works well for him. That’s why, for instance, despite the vendor’s lack of cooperation, he created a little self-tracking form (as described in his excellent 8 minute TEDx talk) and figured out that scotch whiskey gives him atrial fibrillation.

Without the vendor’s help.

So now he doesn’t drink scotch.

Well, yesterday around noon PT, Hugo had an arrhythmia that made his heart go wonky for a full twenty seconds. It was Not Pleasant – imagine your heart (with known problems) going crazy in a way that doesn’t stop – yet his device didn’t say a thing. (Addition 5/11: as Hugo explained in a comment below, the device did in fact respond, probably saving his life, but he had no way of knowing – it gave him no indication.)

He called 911, then felt better, so he got himself driven to the ER. He has high deductible insurance. He live tweeted it; here’s a Storify capture. He’s fine today, but note the delays and things that could have been catastrophic.

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Millenson on THCB: Will Regina Holliday Become Health Care’s Rosa Parks?

e-Patient Dave | May 6, 2012

[Reminder: The place to register an official comment to the government is this page on Regulations.gov. Monday May 7 is the last day.]

How slowly culture changes.

In September 2009, at the founding of our Society for Participatory Medicine, the cover of Health Leaders magazine said the e-patient was The Patient of the Future. It was a great, in-depth article with subtitles like “Technology connects patients and providers,” and Access to EHRs creates engaged patients.

Their readers may not be such leaders. Two years later (10/09) the cover said “Engaging the Patient,” yet its opening spread Treating Patient as Partner led with this report on readers’ current attitudes:

In our annual Industry Survey, leaders cite patient noncompliance and lack of responsibility as the fifth-greatest driver of healthcare costs at their organizations. … What do healthcare leaders need to do to effectively engage patients and get them to become responsible healthcare partners?

How about giving us information and welcoming our efforts to engage? We know not all patients are actively engaged – look at your reaction when we try.

How ironic that the American Hospital Association now advocates for delaying our access to our records for 30 days – even as they face new penalties if patients’ health fails and they go back in within those same 30 days.

Millenson’s post

Monthly introduction to e-Patients.net, blog of the Society for Participatory Medicine

e-Patient Dave | May 6, 2012

This is our monthly introduction to e-Patients.net, blog of the Society for Participatory Medicine. Follow the Society on Twitter (@S4PM), Facebook, and LinkedIn. Here’s how to become a Society member, individual or corporate.

Our publications:

This blog is e-patients.net. Subscribe via RSS or email, tweets etc.
Our open-access journal is the Journal of Participatory Medicine (Twitter: @JourPM)

“Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.”

Additional resources:

SPM’s responses to the proposed rules for Meaningful Use Stage 2

e-Patient Dave | May 5, 2012

Afternoon additions:

You too can submit your opinion on the official public comment site. They even allow uploading attachments.

As I just told a friend on Facebook: “How often, before this administration, did Washington make it truly easy for anyone to tell their story, from home? This administration is really open to this, and I have it on close first-hand authority that they actually read every one of these things, and the people in charge making the rules actually do care.”
Participate!

At bottom, I listed my personal highlights from these two short letters.

From David Harlow JD MPH, policy chair for our Society for Participatory Medicine:

Click to open letter to CMS (PDF, 183k)

Click to open letter to ONC (PDF, 183k)

I’ve uploaded SPM’s comment letters for Meaningful Use Stage 2 regulations, one for the Medicare/Medicaid regulations, one for ONC. Each letter opens like this:
____________

The Society for Participatory Medicine applauds the work done to date in focusing on patient engagement in the proposed Stage 2 Meaningful Use regulations and the proposed Health IT Standards regulations. It is our hope that the final requirements will be even stronger and more focused in this regard than the current drafts. As set forth in greater detail in the attached letter, we have a number of comments that we believe will improve the regulations and their use as a lever to improve patient experience, patient engagement, patient care and, ultimately, patient outcomes. We would like to highlight two in particular:

International survey for chronic disease patients

e-Patient Dave | May 4, 2012

Doctoral student Mohamed Chekli met SPM member Matthew Katz MD (radiologist), and asked for help with a survey:

“With this the AHA admits that it does not know what an EHR was and is meant for”

e-Patient Dave | May 4, 2012

Cross-posted from the ICMCC blog, a post by its chairman, Lodewijk Bos, a Dutch cancer patient who is a great advocate for information, technology, and patient engagement. The ICMCC news feed is a terrific daily compilation of health IT news.

A long-time advocate for patient empowerment – from his own experience beating unbeatable odds – Lodewijk is not happy with the position taken by the American Hospital Association to stall giving us our medical records.

AHA – Erlebnis ["epiphany"]

I am not a US citizen, so I can’t officially react to the latest news from the US patient access front nor put my opinion on the “protest page“. What is going on. First see this post from the Healthcare IT News and following see the post my friend e-Patient Dave wrote about it.

When Dave wrote me a short mail about it, I decided that I should write this post. First, I am president of a foundation that deals with the social, societal and ethical implications of computing and networking (Compunetics) in medicine and care. Second, the ICMCC foundation started it’s first internet appearance with the Record Access Portal we initiated in 2006 followed with a recommendation to the WHO on patient record access in 2007.

Important ONC/NeHC Webinar, noon ET – the Patient’s Role in EHR Data Quality (SPM speaking)

e-Patient Dave | May 3, 2012

I should have announced this long ago but I’ve just been too busy for my own good. Go register now! FREE! Attendance is limited to 1,000. (It’ll be archived online of course.) Or click the graphic to register:

Why this matters: Data quality is important, and it’s not guaranteed.

As long-time readers (and members of our Society) know, the quality of the data in your medical record is important, and it’s often not well managed at all: it’s quite common for family to discover errors or omissions. In some cases the mistakes can be lethal. The case for Patient Engagement is clear: do you know what’s in your record? Someday a health worker may look in the record, and if the wrong info is there, harm could result.

You could say: the good news is, medicine is finally computerizing. The bad news is, there might be grit in the database. Time to get to work and clean it up!

Wonderfully, our current administration’s health IT people (ONC) get it, and are publicizing the issue.

American Hospital Association declares war on patient empowerment. Please act.

e-Patient Dave | May 2, 2012

[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:

Globe article on EMRs: status and the safety issue

e-Patient Dave | April 30, 2012

Paper records spilling from doctor's shelf onto a keyboard

Wesley Bedrosian for the Boston Globe

In today’s Boston Globe, the cover story for the daily ”G” magazine is “Record-Keeping 2.0,” by Chelsea Conaboy (@cconaboy). Subtitled “Medical care is shifting to electronic data files – but how safe is it?”, it’s a good mass-market introduction to the subject and where we sit today. If your grandmother or neighbor wonders what all the fuss is about, this is a good place to start.

This matters, because it’s a complex and important subject with a lot of half-informed whining, but Conaboy gets it right.

Many observers have written accurately about some aspect but have gotten the big picture wrong. Instead, Conaboy leads with an on-target vignette of a local doctor with a complex patient, focusing the story on a real-world example of why EMRs are needed: complex chronic cases like this account for a large part of America’s world-”leading” health costs.

Regina Holliday in Newsweek (Shannon Brownlee on hurried docs and lack of care)

e-Patient Dave | April 19, 2012

What news to wake up to – SPM’s “resident artist” Regina Holliday is in Newsweek. It’s not a happy story – nothing about her story is – but it’s good to see such things getting the visibility they deserve.

The article, by Overtreated author Shannon Brownlee, is The Doctor Will See You – If You’re Quick. The subtitle is “Feeling like your doctor is rushed, distracted, or just doesn’t care? You’re not alone, and it may be hurting your health and your pocketbook.” It starts with the story of Regina’s first visit with her husband Fred to a doctor, who was uncaring and rushed.

Factoids in graphics:

7 out of 10 doctors reported that since beginning their practices, the bond with their patients has eroded.
The average primary care physician takes on 28% more patients than is recommended to ensure quality medical care
10%: The average decrease in primary-care physicians’ income between 1995 and 2003
23 seconds: the average amount of time a patient has to explain symptoms before being interrupted by a doctor
10% of prescriptions written by doctors outside a hospital contained at least one error

“The cancer at the core of evidence-based medicine”: Ben Goldacre on the missing data

e-Patient Dave | April 17, 2012

Updates: The text below the video was added later on 4/17, and the graphic was added 4/18.

For me the evidence highlight of TEDMED last week was a talk by Ben Goldacre MD (@BenGoldacre), a charming and articulate doctor who’s dug deeply into what seems to be scurrilous business: suppression of evidence that doesn’t favor the drug being studied. So he’s undertaken a project to dig up all the clinical trials that were registered with the FDA, and find the ones that never got published.

Think this is nit-picking? Watch this 6 minute hallway chat I had with him, late the last night of the conference. He calls it “The cancer at the core of evidence-based medicine.”

The video is hand-held-iPad shaky – forgive me, ignore it, just listen to the audio.

Example: in a survey of all 74 trials ever submitted to the FDA for anti-depressants, about half had positive outcomes – but only 40 papers were published, of which 37 were positive. Of the 36 negative outcomes, only 3 were published.

So here’s how that boils down: (Graphic added 4/18)