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“That means there is hope” – Atul Gawande at #CISummit


Gawande speaking at Care Innovation Summit
Edits made in the discussion at bottom, 1/27.

Quick post from the media table at today’s Medicare Innovation Summit:

Deservedly famed surgeon & author Atul Gawande just put together a bunch of thoughts into a potent summary. Paraphrasing from memory:

There is a bell curve for quality – a wide gap between the best care and the worst.

There is another bell curve for costs – again, a wide gap.

Surprisingly, the two curves do not match.

And that means there is hope.

Because if the two curves did match – if the best care were the most expensive – then we would be talking about rationing.

Instead, we’re talking about what works.  [This one was his point, but not his actual words.]

This is immensely important, because so often we hear people say things that the data don’t support:

  • “Costs are high because America’s care is so good.” But the curves don’t align.
  • “We can’t afford to give everyone the best – we’re already spending too much.” There’s plenty of money already, if we can get all providers to do the effective things.

A major issue is the providers who aren’t even trying to do what works – and the consumers, employers and insurance plans who don’t react to this data by taking their business elsewhere, putting costly and ineffective providers out of business.

If patients and clinicians are going to be fully empowered, collaborating to create better outcomes, we need to share this awareness with each other. Be empowered and speak up – don’t act powerless, like “there’s nothing we can do – the system is a problem.”

You can watch the summit live here and follow the twitter feed at #cisummit. The event’s web page is HCIDC.org; agenda is here.

 

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Medical Devices: Another take on “We want Access to our Damm Data”

Another potent guest post by SPM member Alexandra Albin, @MsAxolotl. If this doesn’t give you a sense of who is “the ultimate stakeholder” in health matters, nothing will.

Remember, “patient” is not a third person word. Your time will come.

A conversation on the SPM listserve was started by Joleen Chambers, @JjrkCh, a patient advocate for patients with failed medical devices. Here’s her Failed Implant Device Blog. She made a plea to have our members support a petition on the ConsumersUnion site that would enable medical devices to be more heavily scrutinized by the FDA, and outlined the needs for a better tracking system of medical devices than which currently exists. This includes the ability to contact patients in the event of a device’s recall.

These are all critically important things to have in place. I have a vested interest because I happen to have a failed medical device.

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Hugo Campos on NPR’s “On The Media”

Read to the end…

Our man Hugo Campos (see Friday’s post) is becoming a media star! TEDx, then MIT Technology Review, now NPR’s ”On The Media”!

From SPM co-founder Joe Graedon, of People’s Pharmacy, on the SPM listserv – see also the items below …

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Hugo Campos at TEDx Cambridge: “Gimme My Damn Data,” Defibrillator Edition

We often say here “Gimme my damn data,” referring to our sentiment that data about our health is our data, about us, created for our well-being. And as the saying goes, “Nothing about me without me.”

And where, we might ask, is that more vital than in the heart?

SPM member Hugo Campos (Twitter @HugoOC) has a cardiac condition that makes him vulnerable to sudden cardiac arrest. Fortunately he has a device, an ICD – implanted cardiac defibrillator – a magical gadget that helps prevent arrest.  That’s good. But he’s also a geek – a data fiend – who would really like to make use of all the data in the ICD, and he can’t get at it. After all, he has a digital pedometer, Zeo sleep system, digital everything, and he tracks all that data – isn’t it ironic that the most important data is hidden from view?

So last fall at TEDx Cambridge, he gave this nine minute talk that makes the case – compellingly, I think – for letting him do as much as he can to use his heart’s data to save his own life. And tells the TEDx world about SPM, and e-patients “shifting from being mere passengers to responsible drivers of their health.” Spread the word!

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The Rise of the e-Patient

Lee Rainie, director of the Pew Internet Project,  presented this wonderful overview of the Project’s health findings at Providence St. Joseph Medical Center in Burbank, CA, on January 12.

Another summary of the Project’s health research is the following tip sheet, compiled by yours truly. I plan to keep it updated, so bookmark Pew Internet: Health on pewinternet.org.

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e-Patient hits the mass media: WBZ Radio and Angie’s List magazine

It’s one thing when we “talk amongst ourselves” in our own circles; it’s a whole different thing when the message starts popping up in *mass media*, where it reaches people who had no idea.

So it’s big news that we’ve had TWO mass-media developments this week with almost identical titles:

  1. Fabulous article in the January Angie’s List magazine, Empowered patients receive the best health care
  2. Last night SPM member Nancy Finn (Twitter @NFinn8421) was on “Nightside” with Dan Rea, on WBZ Radio. She was discussing her book e-Patients Live Longer.  Nancy was thrilled (as was I, listening) that the callers – which that show does NOT screen – all turned out to be e-patients! One was even a regular caller who the host knows well … Dan had no idea the guy had a big e-patient story!

Evidently there are more of us than even WE realized – and with this mass media coverage, we can anticipate more.

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OpenNotes helps me prep for a visit

My annual physical is this Friday.  Since my doctor and I were among the guinea pigs participants in the OpenNotes project, I just got this reminder email:

Message Date/Time: 1/17/2012 10:00:06 AM
Read Date/Time: 1/18/2012 7:19:08 AM
From: OpenNotes, Study
To: deBronkart, Richard Davies
Cc:
Subject: Reminder: Review your doctor’s notes before your next visit!


Dear Patient,

You have a visit scheduled with your doctor soon, and you may find it helpful to review the notes your doctor wrote after your last visit.

The doctor’s notes can be found in the new “Notes” section of PatientSite.  To view your notes, …

I did, and my goodness, there’s a bunch of stuff in there that I’d forgotten!  (Shortly after my June visit I blogged that I’d looked back at the notes to remember a to-do, without having to call the office. Nice.)

Observations:

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MIT Media Lab’s Health & Wellness 2012: ten day innovation fest, six us-centered projects

Updated 9:38pm ET – fixed many broken links :-/

I’m spending today (ONLY today, unfortunately) at the MIT Media Lab’s third annual Health & Wellness Innovation event.  It’s a two week competition – six teams pursuing some terrific ideas for the most patient-friendly health innovations I’ve ever heard of. Or close to it.

I’ll write more about it but for now I want to just get this started, because I think they’re going to be crowd-sourcing input from us out here, via Twitter and probably some blogs.

These are all heavily data-centered, open-source, collaborative projects. Below I’ll say why this looks so very different to me. But first, here are the Twitter hashtags, with links to the Twitter feeds:

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Open knowledge saves lives. Oppose H.R. 3699!

Note: Although currently not a member of the SPM, I have been involved, since its inception, with Tom Ferguson and others, in the creation of the e-patients white paper . I am also one of the co-founders of the SPM and one of the volunteers who created the infrastructure and policies of JOPM, an Open Access, peer-reviewed publication where articles are published at no cost . Today, I use the privilege offered to the founders of this group to post on e-patients.net in my name only and not representing SPM in any way.
 

Update: ”Support the Open Access Movement: Stop the Research Works Act!”, a new online petition,  has been setup to allow anyone to voice their opposition to the terrible proposed piece of legislation known as H.R. 3699/RWA. Please, spend a few shirt minutes there and let the world know of your opinion!

In 2008, in culmination of years of effort and community interaction, the National Institutes of Health made all federally-funded research publications openly accessible by publishing the NIH Public Access Policy. The purpose of mandating such open access, at a maximum 12 months after publication, was to ensure that the findings are accessible to all their potential users, not just (as in the print era) to those whose institutions can afford subscription access to the journal in which they happened to be published. Opening access maximizes dissemination, a key element to maximize scientific discovery (see the great 2008 presentation by Elias A. Zerhouni, M.D., NIH Director, to the Subcommittee on Courts, the Internet, and Intellectual Property). Of course, ACOR members were highly supportive of the proposed policy and provided a significant number of comments during the initial RFI period.

In 2009 the policy was made permanent by the Omnibus Appropriations Act:

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HBR blog: “The trouble with treating patients as consumers”

Edited a few minutes after the original post.

Over on the Harvard Business Review blog a post yesterday is stirring up discussion. I hope well-informed SPM members can help shed some light in the comments there, citing as many specifics as you can.

(As I compiled the paste-ins for this post, I was struck again by how much I love blogging and social media. Just look at the great thoughts that are being spread, in mere hours!)

The post is The Trouble with Treating Patients As Consumers, by Augusta Meill and Gianna Ericson at Continuum, a design and innovation consultancy. Please read the post carefully yourself – my own first reading late last night was too quick. Here are some excerpts, then some comments already added by SPM members then I gotta run – busy day here, starting with voting in the New Hampshire primary.

The post begins:

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Ileana Balcu: The marriage of HIT with quality, transparency and cooperation between patients and doctors

In the latest post in our Why I Joined SPM series, guest blogger Ileana Balcu shares her story of pain, searching, and finally healing, once she discovered the e-patient community. Follow her on Twitter at @yogileana.

It was 2002 and I was happily pregnant. I thought I’d read all I could about pregnancy. But scary things started happening. A little bleeding, a little more. Tests, tests, tests, lots of doctors, always a heartbeat. It was never clear whether we would have a baby or not. At 24 weeks of pregnancy, it became painfully clear. In the hospital, with just days of the pregnancy left. Ten days later, I was home with no baby, after a weeklong fight for my own life. We started scouring the internet to understand what happened to me. We met with my doctors a month later and came back with few answers, but with a website: Pubmed. We could not get an answer to a simple question: how many women that had severe early onset preeclampsia will get it again in a subsequent pregnancy. The studies were few and inconclusive.

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