We need a Life Record. An EMR misses the information

Meaningful use start's with Patient Data. Not Data about the patient but rather - The Patient's Data. As in "the Patient OWNS their data." 

If you want to understand the importance of the Patient owning and having automatic access to THEIR health data just take an opportunity to listen to @ReginaHolliday's story of how she lost her husband. 

I was at a Social Media event last night and jotted some notes from Regina Holliday's talk. ( http://ekive.blogspot.com/2011/02/tbos-reginaholliday-thoughts-on-patient.html ).

That discussion drove home the fact that we don't know what needs to be in our PHR. We need a life record not a medical record. Then we need tools to be able to evaluate the data points we collect and look for meaning. 

A life record would hold the clues to the symptoms that prompted us to visit a physician or hospital which would result in information being added to our medical record.

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Breakdancer ahead?

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#TBOS @reginaholliday Thoughts on Patient Access and Social Media

Regina Holliday tells the moving story of the loss of her husband.

Regina, encouraged by her husband Fred, joined Facebook to help organize a child's birthday party.
From Jan to March 2009 Fred's condition deteriorated with bone breakages and multiple pain medications.

An Open MRI revealed metastasis that had spread everywhere.
Fred was hospitalized in 5 facilities in 11 weeks. He only had wifi access in 2 locations.
To get Fred's medical record would cost 73 cents per page and 21 days to get a copy.

When they finally got a medical transfer they were sent with an out of date and incomplete medical record.

One reason for denying access to a medical record: "Patients aren't educated enough to understand it"

"Twitter gave me access to a Doctor willing to tell me the truth"

Facebook as PHR - 10.7% of Facebook posts made by Fred Holliday were relevant to his kidney cancer.

Social Media and Art came together to promote patient access to their medical data.
@ReginaHolliday - Meaningful Use now demands patient access to their data in 3 days. An outcome of her advocacy at ONC.

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#TBOS Rory Cooper - The Heritage Foundation and Social Media (@AmericanU

Rory Cooper - Director of Strategic Communications, The Heritage Foundation 

Social Media isn't about getting the most followers. It is about engaging people in topics you care about.

The Like Button is a starting point for a conversation.  How will you interact with the people you connect with.

How do you deal with the believers and non-believers.

Facebook growth far surpasses any previous media channel. 

The point is to work out how to interact with the people who have connected with Facebook. 

Facebook >500M users

50% log on every day.

Heritage Foundation has over 301,000 fans. This is 50% more than the RNC (200k) and DNC (209k).

People connect on networks like Facebook to do something.

Twitter has 175M users (growing at 300k/day.

@Heritage has 106,000 followers and growing.

Twitter is THE place for breaking news, #mobilization and online debate.

First thing Rory did when joining Heritage was to turn off the auto feed and instead engage in conversations, answering questions.

Twitter is a source of information on what candidates, organizations, congress members and the White House are doing.

In Wisconsin both sides of the debate are engaging using the same hashtag. 

Heritage has 115M impression in Q3-4/2010. 400K clicked through to the web site. 550k clicked though to the web site from Twitter in the same period.

YouTube. 50k people watched a video on the Wisconsin public union dispute. YouTube is the big player in presidential debates, press briefings. YouTube will become even more important in the run up to the next presidential election.

Video brings accountability. Everybody is videoing themselves and their opponents. Less is going on behind the shadows.

There are many more choices of social media outside the big three (Facebook, Twitter, YouTube). Pick a couple of the outliers. Understand where your audience is.

Bloggers are new media with substantial influence. Heritage meets with bloggers in a round table every week.

Email is still relevant. The morning Bell newsletter is a daily email with 170k readers and a 35% open rate.

Success requires:

- Engaging with a community

- Get feedback from them

- Stop what doesn't work

The channel (F-T-Y)  doesn't matter - the people that use these channels will still be around regardless of which channels survive.

Heritage's bloggers are their policy people. They have realized that they get more exposure through blogging than through just a white paper.

Most of 300k FB fans are from organic growth. FB ads were used to get about 1,500 users but can be highly targeted.

Heritage is developing a process to identify their "Super users" i.e. the high impact  influencers.

A blogger or Social Media Influencer can be far more powerful than a regular journalist.

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Social Advocacy at American Progress with @reginaholiday #TBOS

We are here at American University - Butler Boardroom supporting Regina Holiday who is featured in:

The Big Book of Social Media: Case Studies, Stories, Perspectives

Robert Fine introducing Dr. Alan Rosenblatt (@CAPAction and @DrDigipol) talking about Social Advocacy at the Center for American Progress.

Talking about using Social Media at the Center for American Progress Action Fund. 

Social Media is the driving force fo advocacy rather than an add-on. 

Old style advocacy was using email. A closed loop system and no one knew what happened. Did supporters take action. Did the recipients in congress act on emails received?

By leveraging social media everyone gets involved. Everything is in the open and can't be ignored.

Act.ly tracks mentions - the equivalent of a signature.

Also using Facebook pages for members of congress. A constant flow out in the public eye. 

Center for American Progress has blown up it's influence model. A whole new group of influencers have come in to play.

Who do people trust?

Academic experts are the most trusted in North America. 

Peers (people like us) NGO's and their representatives are the next most trusted.

American Progress has developed multiple brands on Twitter. They have also developed twitter channels for the staff behind the brands.

Social Advocacy can be best used to target a committee, swing voters in congress rather than the entire congress.

Facebook posts stay on the wall longer. Twitter is more transient.

Clicking the Like button is the price of admission on Facebook.   

Multiple channels have an additive impact when combined. One channel doesn't have to replace another.

YouTube - Video is powerful. It is a host rather than a channel.  

"Viral is a phenomenon and not a strategy".

A word of mouth campaign is needed.  If all the signs align it can then have a life of it's own. ie. it become's viral.

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@Tweetdeck for iPhone crashes - my cure

For a while my copy of @Tweetdeck on my iPhone has been regularly crashing. I could cause a crash with ease. All it needed was to hit the Refresh button and the app would quit back to the Springboard menu. Today it got even worse. Tweetdeck would not even load on my iPhone. I tried restarting my iPhone - No dice. I could no longer access Tweetdeck. My next step was to sync my iPhone with iTunes. Another restart of the iPhone and still no dice.

The final step that I took was to delete Tweetdeck from my iPhone and re-install. This seemed to fix the problem. After going through the re-install process and re-syncing with the Tweetdeck servers my search columns were back. What's more not only does Tweetdeck load but now the refresh button works without crashing the app.

So, if you are having problems with Tweetdeck on the iPhone try deleting the app and re-downloading from the App Store.

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Overcast after a light dusting of snow @skiliberty

Off to a morning clinic on the backside

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You trust your Doctor but Do you trust yourself with your health data?

Via Slashdot....

"A soon-to-be-released survey from CDW shows that Americans trust their physicians to use their health information responsibly, but they're very concerned that once in electronic format, their personal health information may suddenly show up on the Internet. Their fears may not be unfounded. CDW said that survey data showed 30% and 34% of doctors lack basic anti-virus software and network firewalls, respectively. Most amusingly, however, nearly a quarter of the 1,000 patient respondents said they don't even trust themselves with access to their own electronic health records."

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Snowman on the magic carpet @skiliberty

Mark Scrimshire
B: http://ekive.blogspot.com
....Sent from my iPhone

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The bumps are lovely and soft @skiliberty

I am off to practice some bump skiing @skiliberty. It is a fabulous day for it

Mark Scrimshire
B: http://ekive.blogspot.com
....Sent from my iPhone

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Can You Hear Me Now. With the iPhone finally on Verizon @parislemon can come clean about his other job...

With the release of the iPhone on the Verizon network MG Siegler can finally come clean about his other job....

can you see the resemblance???

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@LostonRoute66 recaps Feb 12th Health 2.0 Dev Challenge code-a-thon #HealthCamp

On Saturday, February 12th at Georgetown University, Washington DC, a great Code-a-Thon took place as part of the Health 2.0 Developer Challenge. I wish I could have been there but I was on duty @skiliberty (http://www.skiliberty.com). Thankfully David Hale (@LostOnRoute66) was amongst the crowd of observers and has posted a great report here: http://www.govloop.com/profiles/blogs/health-20-dev-challenge-wrapup

I would like to see the Code-a-Thon connect up with HealthCa.mp. HealthCamp encourages the participation of consumers, patients and medical professionals. Bringing these passionate voices to the Code-a-Thon could inspire some great uses for health data that solve real challenges.

So let's do it!

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If you are tempted by a Shiny 27 inch Apple Display but....

If you have been tempted by a shiny Apple LED 27 inch Cinema Display. You know, the one with the DisplayPort adapter, but you have an older MacBook Pro or Mac Pro Tower check out this little Hardware gizmo from Atlona:

 

 

 

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Off to clinic @skiliberty. Conditions are great.

It's 80's weekend @skiliberty and with fresh groomed snow the conditions are wonderful.

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#health2stat more questions

Healthdata.gov open for feedback on useful datasets to add.

Mark Scrimshire
B: http://ekive.blogspot.com
....Sent from my iPhone

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#health2stat questions

Iphone app design: Initial design was internal now use user feedback to drive design evolution Healthdata.gov: where is the data? Most is on agency servers. Next step is to move Data to the cloud

App data usage: my DS 2000 people download app from all over the world.

Mark Scrimshire
B: http://ekive.blogspot.com
....Sent from my iPhone

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#health2stat Kim Fawcett new approach to health information dissemination

Samhsa.com

Created a substance abuse taxonomy

Site allows drill down on key substance abuse categories but can also access via associated folders.

The taxonomy allows slicing and dicing much like Amazon's teamed items information that it provides to buyers.

Mark Scrimshire
B: http://ekive.blogspot.com
....Sent from my iPhone

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#health2stat carol schechter impact of digital marketing

Achieving changes In health behavior.

Digital media has an impact. Focus was CDC "the flu ends with U" campaign
Increase vacinations for the flu

Digital ads. 80+ different social platforms

24% increase in intention to vaccinate amongst those who had not previously been vaccinated.

Mark Scrimshire
B: http://ekive.blogspot.com
....Sent from my iPhone

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#health2stat Christian Liu healthdata.gov

Creating communities around health data.

Health data and tools on data.gov

Iterative deployment of data and tools. Linking to other Data sites. An apps expo with health2.0 featuring apps that utilize federal health data.

Launches on Feb 15th

Mark Scrimshire
B: http://ekive.blogspot.com
....Sent from my iPhone

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#health2stat potentially lifesaving uses of data

Hundreds of SPS create knowledge. Now we turn to data.

3 Paradigms of science: 1. Theory
2. Experiment
3. Compute and simulate
Now there are 4. The next big idea.
4. Data mining.

Data mining can predict results.
Data creates knowledge.

What's next.

Data is locked in PDFs.
Www.datamasher.org

Create graph from 2 variables

CountySinRankings

ObesityEpidemic

Think how we can use data to unlock the answer to global problems

Mark Scrimshire
B: http://ekive.blogspot.com
....Sent from my iPhone

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#health2stat @dougnaegele introduces the speakers

Jody Engel don't worry be appy

How do you remember your medications and supplements when you are completing the clipboard in the doctors office.

My dietary supplements app on the iPhone. My DS.

PR tool for office of dietary supplements Some issues along the way

- setting up an apple developer account for federal government

- apple released iOS 4 and iphone4

- the project js not complete when it reaches the app store. More like a web site that needs constant support and maintenance.

Mark Scrimshire
B: http://ekive.blogspot.com
....Sent from my iPhone

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Affordable Care and The Individual Mandate

There is a lot of discussion going on about the Affordable Care Act and the constitutionality of the Individual Mandate. The Individual Mandate is a key part of the Affordable Care Act. Increasing the size of the insurance pool is essential to spread the risk and balance the additional costs incurred as a result of the expanded coverage the ACA provides.

The constitutionality of the Individual Mandate will probably be decided in the Supreme Court. If the court sets the Mandate aside what are our alternatives?

One option might be for the Federal Government to provide individuals with a tax credit to contribute to the cost of their Health Care. Insurance companies would provide a certificate of Insurance in much the same way we are currently provided with a W2. The challenge with the current plan to penalize individuals that do not have Health Insurance is that the penalty is a fraction of the cost of purchasing insurance coverage. This isn't a deterrent to people going without insurance until an incident occurs. This situation could be changed if Insurance companies were allowed to provide back dated coverage.

How would this work... Let an insurance company collect insurance premiums back to the prior insurance coverage expiration, or to 12 months prior, whichever is the shorter period. The back payments could be apportioned over 12-24 months of the new contract.
Changing the rules to allow cost recovery for gaps in coverage would help discourage people form dropping coverage until they are sick.

This change could overcome the constitutional issues that surround the Individual Mandate. The combination of tax credits and cost recovery for up to a one year gap in care would allow people to choose not to have health insurance, but if they change their mind they have to pay a catch up penalty which can be partially offset by qualifying for health care tax credits.

I am sure there are numerous challenges to address but we shouldn't just sit back and wait for a Supreme Court decision. After all, in the State of the Union Address the President indicated a willingness to look at improvements to the Affordable Care Act. There are many positive elements to the ACA, such as the extension of coverage to young adults on their parents health policy, the removal of the pre-existing condition, the removal of benefit caps and improved preventative screening benefits. We don't want to see those disappear.

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Did You Know?

via youtube.com

My Mum is spending time on YouTube. She found this interesting, if not scary.

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