Why Patients Need Granular Permission Options on Electronic Health Records...

White House Press Secretary Robert Gibbs told CNSNews.com he has “no idea” if people can opt out of having certain diseases and abortions excluded from the Electronic Health Records that doctors and other health care providers must create for every American by 2014 under provisions in the stimulus law that Obama signed in February.

From: "CNSNews.com - Gibbs: ‘I Have No Idea’ If People Can Exclude Certain Diseases and Abortions from Gov't-Mandated Electronic Health Records."

Why am I *not* surprised Uncle Sam doesn't agree that #myhealthdata isn't really mine?

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Will Genetic Diseases Become the NextGen Scarlet Letter?

New guidance for Britain’s 150,000 practising doctors could remove the right to confidentiality from patients with inherited diseases.

When a patient is found to have a gentic disease, such as certain forms of cancer, doctors will be obliged to inform relatives about potential risks to their health, the General Medical Council (GMC) say

From: " Genetic disease patients may lose privacy rights to protect families - Times Online."

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Why mHealth is the Future: The Gospel According to US CTO Aneesh Chopra

Everyday today when I visit a certain coffee shop, I enter into my iPhone — I click, click, click — and it tells me exactly what my sugar consumption patterns were from that grande vanilla nonfat latte, and it becomes very clear to me what this has done to my nutrition habits,” Chopra continued. “So I don’t know, and nor should the government be in a position to tell the country how and in what manner these applications should come together. If we create the market conditions that would spur market innovation: We hope to create a great deal of innovation anchored to the consumer and anchored around prevention and wellness. That’s the opportunity in healthcare that everybody believes whether conservative or liberal.

From an interview by Matthew Holt, Health 2.0 LLC, (@boltyboy on Twitter) with Health 2.0 keynote speaker Aneesh Chopra.

"Federal CTO tracks eating habits via iPhone | mobihealthnews"

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Your Brain = Livewire(s) or "Uncomprehending Chaos"?

The human is made up of 100 billion — live wires that must be kept in delicate balance to stabilize the world’s most magnificent computing organ. Too much excitement and the network will slip into an apoplectic, uncomprehending chaos. Too much inhibition and it will flatline. A new describes how the trillions of interconnections among neurons could maintain a stable but dynamic relationship that leaves the brain sensitive enough to respond to stimulation without veering into a blind seizure.

From PhysOrg: "New model suggests how the brain might stay in balance"

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President Obama Wants You to Make a Healthcare Reform Commercial

In many ways, the fight for health insurance reform comes down to a battle over information. The more people know about how broken the system is and the President's plan to fix it, the more they want change. But there are an awful lot of lies to cut through, and a whole lot of truth to get out.

So today, we're proud to announce a powerful new way for you to help: Organizing for America's Health Reform Video Challenge.

This is your chance -- you ingenious, insightful, funny people out there -- to make a 30-second ad telling the story about why the status quo has got to go, or explaining how the Obama plan will ensure we get the secure, quality care we need without breaking the budget.

The top submissions will be voted on by the public and a panel of experts, with the winning ad aired on national television. This is your opportunity to add your voice and creativity to the debate, get some great exposure for your work, and make a huge difference.

From an email sent to me by Natalie Foster, from the Barack Obama mailing list, titled: "Health reform video challenge." 9.27.09

Immediate reactions:
1. Hope they get some creative submissions from Health 2.0/Medicine 2.0 folks
2. Hope they get some creative submissions from people we DON'T know
3. This is a great play by the Obama administration to get free creative/ad work done
4. I hope the administration appreciates and archives words/phrases shared in submissions - I'd like to see a semantic analysis on hot point syntax

Curious - would you submit a video? Why or why not?

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ePatients Are the Future of Medicine?

If you have not read the e-Patient White Paper, you do not understand the future of medicine. Being an e-Patient is beyond being empowered.

From @johnsharp's blog: " eHealth: Journal of Participatory Medicine and e-Patients"

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Paging The "What's In the Box" Programmer(s) in NL: You Guys Should Do Secure Health Design!

What is the password to the "what's in the box" website?

I was on youtube and stumbled on this video http://www.youtube.com/watch?v=IU_reTt7Hj4&feature=rec-HM-fresh+div the video is pretty intense so i went the website in the info section, to see what it was about. the website consists of a red glowing circle and some credits beneath it if you click on the circle it gives you the opportunity to type in a password everything ive tried doesn't work can anybody help me?
  • 4 months ago
a@2 by a@2
Member since:
September 30, 2008
Total points:
2815 (Level 4)

Best Answer - Chosen by Voters

Hey this is what i found

Click on the lower quadrant of the ring, and an input box appears. Various keywords will provide responses, but of most interest is:

help which then displays “high contrast“
Others keywords include:

(anything incorrect) “uh uh uh, you didn’t say the magic word“
please = ”who are you, Dennis Nedry?” (a reference to the character from Jurassic Park who secured his computer with the message above, and ‘please’ wasn’t the answer)
whatsinthebox = “soon the world will find out“
thebox = “what’s in it“
tenacious d “simply the greatest band on earth“
babel “why are you giving me the directions, if you are the one who needs them“
babelresearch “babel re-search“
saga “noevilsagasliveon“
hanso “4 8 15 16 23 42“
4 8 15 16 23 42 “SYSTEM FAILURE“
pandora “Copay Pales“ (apocalypse?)
date “06-08-2018“
Given the help response, boost contrast, capture the full page image of the ring and boost the contrast, and you see the text appear in the lower left:

Now view the source of the WITB page, and you’ll find commented HTML with the text: /snd/jables.mp3
In reverse, this becomes a voice saying:

”local protection team report back“
Also in the source is an HTML comment at the very end containing:

This is a palidrome (like “Tim Smit”, reads the same forwards and backwards)

Finally, also visible in the sourse:

some things will only be revealed through mirrors and light
Unmask the URL
Visit Babel Research
Now view the source of the website, and you’ll find commented HTML with the text:

In reverse, this becomes a voice saying:

“yankee november“
Also in the source, a number of coloured dot images are labeled with hex colour values. Scattered throughout the page HTML are “key” attributes with the same hex values.

Locate these “key” attributes in the correct order:

00ffcf ff00d0 8e01ff daff00 ff0101 01d4ff 000bff 42ff00 fea702
Now click on the dots in the same order:

5 1 2 7 9 4 3 6 8

You should see a picture now

Visit the ABOUT page, then view the source and you’ll find commented HTML with the text:

In reverse, this becomes a voice saying:

“we have a 14-juno situation“
If you recall in the video, a number is entered into the first cell phone, the Samsung A500. In the login entry field at the top right of Babel Research, enter the number:

The page refreshes an this message appears:

As of 6th of august all remote systemchecks have come to a halt. Please contact local authorities or use remote any remote accesspoint.
Watch closely at the bottom of the website, to the left of the corporate logos. Occasionally, a small image of the schrodinger cat will appear.

When it appears, click it quickly, and you can download this audio file

In reverse, this becomes a voice saying:

“found. project attainable has failed“
There’s another clickable object, found in the source, labeled “little secret”. In Firefox, this object is located just to the right of center below the page header (eg, between the “Y” of “Research and Technology” and the “e” of “achieving the impossible” on the BSC page). This method doesn’t work in IE. You can download this audio file

This is a male voice which says:

What’s in the box?
Return to whatsinthebox.nl and open the input box, then enter operation2347 and you’ll be forwarded to a new location…

United European Corps
Once on this site, view the source, and you’ll find commented HTML with the text:

In reverse, this becomes a voice saying:

“located within quarantine zone“
This clip is also revealed in the high quality video stream page source.

The image displayed in the center of this page is located here:

Check out this website, no one has figured out the password yet but they have come a long way http://wikibruce.com/2009/04/a-big-box-o…

  • 4 months ago

From: "What is the password to the "what's in the box" website? - Yahoo! Answers"

Is your mind blown yet? Let's back up.

I'll try to explain the relevance of this one for healthcare innovation but, disclaimer, it's a stretch even for me.

1. @philbaumann tweeted about this freaky video: http://bit.ly/1BsHZc
2. I watched it, was obsessed, and decided to watch it again.
3. Noticed an Albert Heijn sign at 3:52 in - this is a grocery chain in the Netherlands and recognized the symbol.
4. Googled "What's in the box NL?" to dig around.
5. More intrigued.
6. Discovered this site: http://www.whatsinthebox.nl/
7. Then this one: http://www.slashfilm.com/2009/03/18/whats-in-the-box/
8. Then this one: http://babel-research.eu/?about=about

If this is some Dutch art/programming students final design project it's the best damn job I've ever seen.

At first I was sure this was the start of a viral campaign for a Samsung game cube or some such nonsense, but given the last site's design not entirely sure this isn't a nifty amateur project.

The meat in this blog post details all the trixsy hax0r fabulous work on the red circle site: http://www.whatsinthebox.nl/.

Anyone who thinks this way needs to join the h3alth hax0rs.

@philbaumann, thank you for *another* obsession...

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Twitter Gets #myhealthdata RIGHT: Says Online Content IS Users Personal Asset

Ownership—Twitter is allowed to “use, copy, reproduce, process, adapt, modify, publish, transmit, display and distribute” your tweets because that’s what we do. However, they are your tweets and they belong to you.

From: "Twitter Tweaks Terms Of Service, “Your Tweets Belong To You”

God bless you Twitter. #getupandmove :) Now, will we see people begin to copyright their Twitter accounts and tweetnames?

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Fast and the Furious, Physiology Edition: Bacteria Fight Off Antibiotics with NOS?

Scientists have discovered how bacteria fend off a wide range of antibiotics, and blocking that defense mechanism could give existing antibiotics more power to fight dangerous infections.

Researchers at New York University said on Thursday that bacteria produce certain nitric oxide-producing enzymes to resist antibiotics.

Drugs that inhibit these enzymes can make antibiotics much more potent, making even deadly superbugs like Methicillin-resistant Staphylococcus aureus or MRSA succumb, they said.

From: " Study exposes how bacteria resist antibiotics | Health | Reuters"

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If You're Developing For Nurses, Go For the Palm Pre with v1.0

The nurses surveyed favor Palm PDAs and smartphones — followed by iPhone or iPod touch — and then BlackBerry devices.

From: "Epocrates’ survey: Nurses still favor Palm | mobihealthnews"

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Cool InfoViz of the Week: Ebay "Subway" Style Map of Acquisitions and Investments

From: "ebay-companies.png 1212×1266 pixels" via @TechCrunch.

Need to do something like this for Contagion Health collaborative partnerships/working relationships...very nifty.

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Disabled? Receiving Benefits? Must Read: Your Social Security Administration Benefits and Microsoft HealthVault

The Social Security Administration has entered into an agreement to test the use of the Microsoft HealthVault software for SSA's disability determination process.

SSA has been trying out several ways to collect electronically the health records of people applying for disability income. SSA currently requests about 15 million to 20 million medical records a year in a process that is labor- and paper-intensive.

HealthVault is a free online personal health record service in which patients are encouraged to collect and store their health information in a single location.

The SSA said Aug. 27 that it and Microsoft are developing a technical prototype connecting the two organizations that will be available later this year. SSA also will collaborate with Microsoft to study current personal health record standards, gaps in those standards, and options for filling those gaps.

“The use of personal health records holds great promise for ensuring that the medical information we collect from someone applying for disability benefits is accurate and complete,” SSA Commissioner Michael Astrue said in a news release.

From: "SSA testing Microsoft HealthVault -- Federal Computer Week"

Wow. Wonder if this deployment of HealthVault would make Microsoft HealthVault liable under HIPAA rules or the new FTC rules in the event of a breach?

Very shrewd move by the MS team...

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LUCA Lived in a Sea Vent?

The scientists suggest that life on Earth originated at photosynthetically-active porous structures, similar to deep-sea hydrothermal vents, made of zinc sulfide (more commonly known as ). They argue that under the high pressure of a carbon-dioxide-dominated atmosphere, zinc sulfide structures could form on the surface of the first continents, where they had access to sunlight. Unlike many existing theories that suggest was a hindrance to the development of life, Mulkidjanian and Galperin think it actually helped.

From: "Scientists propose new hypothesis on the origin of life" Physorg.com

UV radiation helped life as we know it develop? We may all be mutants yet...

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Cyborg Anthropology Arrives in Medicine via Merlin.net (Europe)

Implantable medical device specialist St Jude Medical has launched Merlin.net, a secure, Internet-based remote care system for patients with implanted medical devices in Europe.

The latest version of the Merlin.net Patient Care Network (PCN) gathers and stores data from the implant procedure, in-clinic follow-up visits and from subsequent remote transmissions sent from a patient’s home.

Remote transmissions can include both patient-initiated and automatic follow-ups and monitoring transmissions sent via a Merlin@home remote transmitter.

The remote monitoring capabilities of these devices, facilitated by the Merlin.net PCN, permit automated hands-free follow-up, and daily device safety checks with no patient interaction required.

As well as giving physicians more timely access to important patient and device data, the wireless monitoring system also allows physicians to compile a more complete patient record by easily transferring cardiac device data into electronic health record systems.

"Remote monitoring of ICDs has been an important development in the management of patients. Systems like the Merlin.net PCN allow us to monitor patients` cardiac conditions more closely, and our patients and our staff find remote monitoring convenient and time-saving," said Dr Chris Plummer, Consultant Cardiologist at Freeman Hospital, Newcastle, UK.

Dr Plummer added: "Being able to wirelessly download data from a St. Jude Medical Accent RF pacemaker confirms the optimal performance of both the pacemaker and the Merlin.net PCN. We look forward to extending the advantages of remote monitoring to more of our pacemaker patients."

According to St Jude Medical the latest version of Merlin.net PCN, supports all radio-frequency (RF) St. Jude Medical implantable cardioverter defibrillators (ICDs), non-RF Epic ICDs, Atlas ICDs, Current ICDs and Promote CRT-D devices.

From: "E-Health Europe :: St Jude connects to implantable devices"

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Paternalism and "Patient Beware" Messages Hit DTC Genomic Testing

Or a man told he lacks genes linked to an elevated risk of heart disease might decide to smoke, eat lots of salt and saturated fats, avoid exercise or develop a large paunch, any of which could overcome his supposed genetic protection.

“It’s important to separate hope from hype,” Dr. Jennifer House, president of the March of Dimes, said at a recent meeting of its national communications advisory council. “Direct-to-consumer genetic testing is a buyer-beware market. Consumers need to be very, very cautious.”

She said that in addition to a possible waste of money — the cost of genetic testing ranges from about $300 to $3,000, depending on the extent of the analysis — there is serious concern about the quality of information consumers receive from testing companies.

From: "Personal Health - Buyer Beware of Home DNA Tests - NYTimes.com."

1. I may live to 100. A DTC genetic test may indicate I have an SNP related to longevity (we think). Does this mean I'm going to go cliff jump, eat my way through my late 20s, take up smoking, or eat chocolate for breakfast? Hell no (except for maybe that last one...)

2. Hope from hype sounds great. Do I expect DTC genetic testing to 'cure' Celiacs? Or breast cancer? Not mine, maybe (and don't worry, I don't have breast cancer, but I DO have Celiacs). But I also understand that to advance the study of these conditions as a whole DTC genomics companies are paving the way for consumers to consider our genetic data our OWN asset. Any sector that accomplishes this lofty goal, and the data to connect (eventually) my personal health data to public health researchers with whom I elect to philanthropically share it has my vote for a sector where e-Patient advocacy is beneficial (mine, and others).

3. I find hairplugs a possible waste of money. I find cars when you can bike or walk or take public transportation a waste of money. I find gastric bypass and cage-fusion spinal surgery a possible waste of money. See my point? I am not qualified to judge any other individual health/tech consumer's 'waste' nor "money well spent" valuations.

The truth is, Dr. House isn't telling us anything we don't know here. ALL of medicine is a buyer-beware market. This is why we have procedures in place (sort of) like 'informed consent.'

All of science, all of the health-food market, even going to the gym is a BUYER BEWARE situation (you've seen the release forms you have to sign for a gym membership, right?)

Back to basics...

1. Would I like to see 'informed consent' forms standardized for the DTC genetics market? Absolutely. Do I think some DTC genetics companies are doing a good job with this? Yep.

2. Could DTC genomics companies provide more decision-support tools (forms, exercises) that help me make an informed decision and teach me about the process of genetic testing that's not whole-sequence? Yep. I mocked up a quick easy 100 point one to look at risks/benefits of sharing my 23andMe results. It took me about 10 minutes to draw out, but about 1 hour to think my way through.

3. Should the FTC judge 'accuracy' and 'reliability' of these tests? No way. I can buy some strange Chinese ginseng virility booster over the counter at the Palo Alto 7-11. Chances are that capsule is more harmful for my health than spitting in a tube for partial genomic sequencing.

4. Could a model of consumer education based around that ALREADY well-developed and in use by the Personal Genome Project (albeit a greatly edited one, spliced way down to the middle school reading level and presented in cartoon format) help DTC genomics companies educate their customers? But of course.

As for the DTC tests being a 'waste of money,' that's a specious argument that lessons the quality of the debate and pushes us backward, not forward.

It certainly does NOT take into account the motivations consumers have for purchasing DTC genetic testing, which I'll detail in tomorrow's post.

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