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Tag: e-patients

An Open Letter to the New National Coordinator for Health IT: Part 3 — Certification As The Elephant in Health IT’s Living Room

6a00d8341c909d53ef01157012476e970b-pi In the first and second parts of this series we talked about how and why there is no universal definition for the term “EHR.” Instead there is a legitimate, growing debate about the features and functions that “EHR technologies” should offer physicians seeking to qualify for HITECH incentive payments. We explored the layers of network technology, suggesting that federal regulators should “separate the data from the applications.”

We also argued that there is much to learn from development platforms, recently and in the distant past, that have used standards to open the aperture of innovation. The best of these standards have reflected the experience of what works rather than specifying how to make it work. Defining the standards for data, devices, and network technologies too restrictively could choke off innovation, rendering HITECH’s offerings whose expense and complexity are a barrier to, rather than an incentive for, adoption by physicians. Incoming National Coordinator for HIT David Blumenthal, MD seems to have been considering just this concern when he recently wrote:“… [M]any certified EHRs are neither user-friendly nor designed to meet HITECH’s ambitious goal of improving quality and efficiency in the health care system. Tightening the certification process is a critical early challenge for ONCHIT.”

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Participatory Democracy, Participatory Medicine

Susannah Fox

More than half of the entire adult population in the U.S. used the internet to get involved in the 2008 political process. Blogs, social networking sites, video clips, and plain old email were all used to gather and share political information by what Lee Rainie has dubbed a new “participatory class”:

  • 18% of internet users posted comments about the campaign on a blog or social networking site.
  • 45% of internet users went online to watch a video related to the campaign
  • Half of online political news consumers took advantage of the “long tail” of election coverage, visiting five or more types of online news sites.

And guess what? This participatory class of citizen is not ready to go back in the box. Many people expect to stay engaged with the Obama administration and you can bet that the rise of mobile applications will accelerate this trend toward engagement for lots of Americans.

My new survey data shows that not only is there a participatory class of citizen, but there is a participatory class of patient.

Most people with a health questions want to consult a health professional – no news there. Second most popular choice: friends and family. Third choice: the internet and books (yes, books are still popular, even among internet users!). But participatory patients (aka, e-patients) are using the internet in new ways. They not only gather information, but seek out expert opinions, such as the “just in time someone like me” who holds the key to their situation.

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Health Affairs is all about IT

Most of the Health care geek squad is in DC as I write, at a press conference conducted by Health Affairs which has an entire issue out today about IT in health care. Here’s the table of contents. And for those of you who don’t have a subscription, well here are four articles for free including those from David Brailer and John Halamka.

As you might guess KP’s HealthConnect is featured prominently with academic articles about the impact of its installation on physicians & the system (office visits down 25%) and patients (they love it).

There’s lots and lots more, including an article that makes stars of nerdy docs Jay Parkinson, Danny Sands and Ted Eytan—if “star” is the right word for this rarefied environment. (Oh, and somehow Bob Coffield got in there too!) My early tweetings on that one (which is the only one I’ve read so far) were captured and blogged by e-Patient Dave. Converting tweets into a blog post and making it make sense may be the new art form. Be warned that despite the words “Facebook & Twitter” in the title, this is about using Health 2.0 tools for patient to physician communication not about the social networking side of Health 2.0. Still I guess there’s room for another article in the next Health Affairs about that.

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Google Health sharing–simple but potentially important

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Today late afternoon PST Google flipped the switch on an important change/add to Google Health.

Recently they’ve been adding more and more little features, such as printing & graphing, and in the last month getting CVS retail pharmacies on the network (to join Walgreens), and sucking up device data. But this new one may be the most interesting, as Google Health has added the ability for users to invite others to see their records.

Anyone who’s used Google Docs (and that includes all of us working at Health 2.0) immediately gets addicted to sharing those spreadsheets and text documents with a wider team. It’s so easy, you just invite them to it, and then one day you wake up and you’re sharing hundreds of documents with everyone you work with and cannot imagine how you did it before.

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Should the FDA relax in the search for new cures?

Over at DiabetesMine #1 health blogger Amy Tenderich has very important post. She and several fellow travelers are appealing to the FDA to strike a balance between safety and progress in allowing new diabetes treatments.

The FDA of course has been beaten to a pulp these last few years because it’s played footsie with the drug industry and ignored several potentially damning studies, with the result that the number of drugs withdrawn from the market has been much higher than in previous years.(Vioxx, Phen-Fen, Baycol, et al).

I’ve always felt that the FDA’s role should not to be a black/white (dangerous/safe) stamp of approval, but instead it should be the honest broker of getting all the data out there. As Amy and her crew point out, some diabetics may be prepared to take a risk of higher long-term cardiac complications in return for a medium term gain from a new medication. Something similar is certainly true in terms of hormone replacement therapy.

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ePatient Dave & his doc Danny Sands speak out

One of the most remarkable people I’ve met this year is Dave deBronkart, better
known as ePatient Dave (fourth from left on top of the e-Patients.net blog). Dave has had a remarkable recovery from cancer and has probably used as many Health 2.0 tools as any patient.His blog is here.

I got the chance this week to talk at length with Dave and his GP Danny Sands. Danny is not only a practicing doctor in the BIDMC system in (Boston, yes that one with the blogging CEO and blogging CIO!) but also the Director of Medical Informatics for Cisco (FD, Cisco is a Health 2.0 sponsor and I’ve done consulting work for them in the past).

We covered a lot of ground in this conversation—starting with Dave’s illness, Danny’s role as a physician working with a very savvy patient, and the role of ACOR. But then we moved onto some critical questions about who will control the patient experience in the future in a world of Health 2.0 and what providers, patients and physicians need to do to prepare for it.

A fascinating conversation recorded via Cisco’s Webex technology that you can listen to here.

PS Dave asked me, what the most important issue raised in this interview was. I said "who is going to perform the function you performed for yourself for people who
don’t grab the bull by the horns the way you did? Because apparently it won’t be the Danny’s or
the BIDMCs of the world"

Fact or Fiction: Electronic health records save money

Note by Brian Klepper: Today the actuarial consulting firm Milliman is convening a town hall meeting in Seattle focused generally on health care reform, but specifically on Electronic Health Records (EHRs). The larger Seattle metropolitan area is a hotbed of health care innovation, with Virginia Mason Health System, Costco, Starbucks, Boeing, Premera and other forward-thinking firms. The conference will have representatives from CMS, Microsoft, the VA, Group Health Cooperative, and Milliman, and is open to the public. Should be an interesting session.

To kick it off, here’s a little piece on EHRs by Jeremy Engdahl-Johnson, Managing Editor at Milliman.

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Of all the initiatives endorsed by outgoing Secretary of Health Mike
Leavitt, few are likely to be met with as much agreement by his likely
successor, Tom Daschle, as the need for wider adoption of electronic
health records (EHR). While there is general agreement on the need for
this technology investment—both presidential campaigns included EHR in
their health platforms—the cost ramifications are still up for debate.
Will electronic health records reduce costs? There are compelling
reasons to answer both “yes” and “no.”

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Health 2.0’s impact on the digital divide

For too many years, I’ve witnessed the same thing. First, it was in the ACOR system. Then it occurred in many conferences about eHealth, e-Patients, and now Health 2.0 and the Connected Health symposium
at Harvard Medical School.

Why is an entire segment of the U.S.
population almost completely absent from the fast evolving world of
Health 2.0 and Participatory Medicine?

The uneasiness has consistently grown since 2004 when we ran our first large in-house survey and discovered
that over 98% of our users are Caucasians and less than 1 percent are African
Americans. It is too easy for all of us to forget about this disturbing
fact.

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e-Patient Dave tells his story

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In the Connected Health conference at Partners I sat in on a great session in which e-Patient Dave (Dave deBronkart) and his physician, Danny Sands described his use of listservs, the Internet, email and BIMDC’s PatientSite and other tools in his (successful!) battle with renal cancer—after being told median survival was 24 weeks. I won’t tell the whole story as they’re trying to get it published in an authoritative journal—so that physicians will pay attention and promote this use of technology by patients.

Danny Sands says most patients with his condition feel incredibly alone. but "Dave told me he didn’t think he was isolated. He felt
connected.”

Dave said, “Reading and connecting online makes me a better patient. But it doesn’t make me an oncologist.” But doing all these things via ACOR and the use of CaringBridge and PatientSite did, he believe, increase his hope & outlook, and helped make his treatment successful.

A remarkable story and one that we’ll tell more about later.

(Note: I made a minor edit as my original note got garbled between my ears and my fingers!)

 

Microsoft Healthvault: Coke, Pepsi or Intel Inside

This post appeared originally on DiabetesMine.

When Microsoft launched its HealthVault application last year — the first major commercial Personal Health Record (PHR) system on the open web — the Wall Street Journal reported that
“Consumers are just not that excited about these services.”  A year
later, I’m wondering: have they given us reason to be more excited
now?  Last week, I grilled HealthVault’s rival Google Health
about the progress they are making.  Keithtoussaintmsft1

Are these big players trying too
hard to be all things to all people?  Or, with their rather generic
“personal health platforms,” do they end up offering nothing much of
value, especially to people living with chronic illness?

This week, DiabetesMine caught up with Keith Toussaint, Senior Program Manager with Microsoft HealthVault, for a perspective from inside the Microsoft dynasty.

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