#tcamp11 Esther Dyson (@edyson) leading a session with M Cary (@boundroid) on Health Data Transparency

More from Transparency Camp 2011 (http://transparencycamp.org/sessions/48/)

Do we have an obligation to publish our de-identified Health Data for the greater good?

[ED: How can we share our data if we don't control it]

Talking about FitBit and Zeo sleep monitor.

PatientsLikeme.com and genomera mentioned about tracking data.

cochrane.org (UK) and bandolier for evidence-based information.

How can I sum up this session. A wide ranging conversation. 

Consumers need to demand their data. When they have access then they can think about donating their data. 

The Consumer is the de facto Health Information Exchange  and not the emergent State-based Health Information Exchanges.

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#tcamp11 How Does Confidential Data Fit Into Transparency discussion

More from TransparencyCamp 2011 (http://m.tcamp.us). The 3:15pm session about confidential data and transparency.

http://transparencycamp.org/sessions/25/

Private or Confidential data categories:

Government Processes:

- Advice/Consultation

- Pre and Post Legal/Enforcement Planning

Administrative:

- Health

-- Personally Identifiable Information (PII)

-- Personal Health Information (PHI) - Medicare/Medicaid

- Courts

Danger of "Mosaic" 

- You can closely identify people by Gender, Date of Birth and ZipCode

FISMA - Federal Information Security Management Act

Proforma Checkbox v. Risk scoring (more nuanced)

Motivations:

- Are these hidden to protect agencies?

-- or to protect political contributors

- Or are they hidden for sake of people at risk?

US Laws:

- HIPAA (Health)

- FERPA (Education)

Playstation Network breach may involve 30% of US Citizens.

70M People's credit card and other personal information.

How do we present reward to releasing information

- Reflect well on an agency

- Deflect political risk

Efficiency and Effectiveness can have implications for our privacy.

17 Agencies have to ask SSA to validate SSN.

More information is online. Harder to operate incognito. Federal information can have local impacts.

"Who are you afraid of?"

Credit cards companies know more about you than the Government. The Government may have more data but can't link it as easily.

Private Data:

- Growing enormously

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#tcamp11 Public Health Data session in Room 7087

The first afternoon session at Transparency Camp - We are talking about Health Data

http://transparencycamp.org/sessions/21/

Discussion topics:

- How are Health Information Exchanges working?

You can refer to my notes from the Health 3.0 conference - Wisconsin HIE is being used to drive down Emergency Room (ER) use and direct people to more cost effective resources. http://ekive.blogspot.com/2011/01/health3-how-hie-drives-down-er-use-and.html

- HealthData.gov

There is a community on www.data.gov to discuss what data should be available.  These are public forums. The interest expressed in these forums can influence priorities for data development efforts.

How can the community help HHS - The best way is to contribute to the conversations in the community section of the site. Show that there are active engaged citizens.

Divisions inside HHS run almost autonomously. This provides challenges.

Department of Agriculture publishes a  Food Atlas: http://maps.ers.usda.gov/FoodAtlas/

This gives context and enables issues to be localized and encourages action.

Check out the Apps Expo at HealthData.gov courtesy of Health 2.0: http://www.health2apps.com/

Check out http://www.countyhealthrankings.org. sponsored by Robert Woods Johnson Foundation. Allows people to drill down in to comparative health rankings.

Putting data in to context - e.g. Rankings enables people to take action.

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Great food at#tcamp11

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

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#tcamp11 The Government is doing some great things with health data at healthdata.gov - Go Build Your MashUp!

Session 1 at TransparencyCamp 2011

I am listening to George Thomas talking about data that is available on, or via, healthdata.gov

Linked data is being used.  RDF - Resource Description Framework is being used. This makes for a powerful data access construct. A great use of web standards.

Clinical Quality data - Hospital Compare Data.

There are 26 different datasets. Reports and Survey data about customer experience. Looked at as State and National Averages.

For the technical: the data  is available via a RESTful interface. ie. the URL string is meaningful.

e.g.  This is what will go on healthdata.gov in a few weeks:

/data/spv/2010-08-26

Data Set : State Payment Values : Date of Publication

/def/hospital/ownership/type

Definition : Attribute - Hospital :  Hospital Type

This data store uses OpenLink Software's Virtuoso Software and the Sparql query language.

The approach that has been taken offers an incredible resource to slice, dice and aggregate data from different perspectives. This becomes even more powerful when the data is mapped and correlated with other data streams. 

The data has been enriched with Lat/Long information. This allows Geo Data mapping and correlation with other sources. This makes for fascinating integration possibilities. 

The basic message is "Go Mashup this data"

I must remember to lookup the REST Console for Chrome. 

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#tcamp11 kicks off. Big audience and lots of buzz (@tcampdc)

This weekend is TransparencyCamp 2011 at Microsoft's Chevy Chase offices. Watch out for a flow of posts from the event over the next two days.

Live updates can also be found at http://m.tcamp.us - this works for mobile users.

There is a shared Wiki. Check it out at: http://piratepad.net/tcamp2011

I have two topics I can talk about:

- Health Care Transparency

- Reputation as a means to break down the glass wall between patients and the medical teams that support them.

I put together a couple of presentations to set some context. I will post these to my account Slideshare Account when I get a good connection: http://www.slideshareshare.net/ekivemark

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TweetDeck 2 for iPhone - I want to love it, if only it were usable

TweetDeck 2 for the iPhone launched this week. TweetDeck is one of my must have applications. One of the first things to be added to a new machine and an application I spend a lot of time in on my iPhone. So, when it was announced that TweetDeck 2 was available for the iPhone I downloaded straightaway.

I really want to love the app but at the moment there appear to be too many bugs under the covers.

The edit screen has been improved. The @lookup is a great feature that works well when you have lots of followers. But where did the # list go. When you follow a number of events it would be useful to be able to recall a hashtag in the edit screen. Am I missing something?

The drill down feature is very neat and makes it easy to find and add new people and streams.

The biggest problem I have had is that TweetDeck is close to unusable. I have a couple of Twitter accounts, Facebook and Foursquare linked to my TweetDeck account. When I go to load TweetDeck 2 I am getting a "Grey Screen of Death" for 2-4 minutes. This makes TweetDeck 2 completely unusable. 

Hopefully I have found a workaround to this issue. The cause appears to be related to TweetDeck loading it's streams when it launches. The default screen is the Home Screen. If you have a large number of accounts then this screen takes a long time to load. 

The Fix to "Grey Screen of Death"

The Grey Screen of Death appears to be an extended timeout as streams are loaded. I managed to overcome this problem by moving my Home screen so that it was not the first screen to load. I moved the "Me" screen to the front of the columns. Now at least TweetDeck 2 appears to load faster. 

I think TweetDeck 2 needs to be modified so that the Title bar with the column heading the "+" add and New Tweet button are available immediately. If the App gets in the way of being able to Tweet quickly it will #FAIL.

While talking about bugs there is an interesting one in the Account Screen. When I first loaded TweetDeck 2 there was a blank Twitter Account as the default account. I couldn't determine what it was. It didn't appear to be an account of mine. It looked more like an open Twitter stream. 

I removed this account and then wanted to reorganize the list of accounts to get my @ekivemark account at the top. Pressing the Edit button and then dragging the accounts is easy. But there is a bug lurking in there. Once you reorganize your list of accounts try drilling down in to the details of each account. You are in for a surprise! The drill down shows the details of the account that was previously in that position in the list. Let me explain. If my Twitter Account was in Position 3 and my Foursquare account was in position 2. When I swap the sequence, after the change when I select my Twitter Account in Position 2 the next screen lists the Foursquare Checkins.

All in All...

TweetDeck 2 is certainly an interesting rewrite of TweetDeck. There are bugs to iron out and if you reorganize your columns to move the Home Screen you may find that the App is usable while the TweetDeck team work out the frustrating time lag issues that appear in different places.

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#hcidc Jason Pontin of MIT Tech Review points to #QS potential

Jason talks a lot of sense. We could not have created a more ineffective health system if we had tried.

50% of costs are caused by 5% of population. We need to invest in NIH and NSF.

He is very interested in Quantified Self.

Patients should have the right to determine their health risks. Proper disclosure is an essential component.

Big innovations....

1. Synthetic genomes breakthrough. Now we can build from scratch

2. Cancer genomics. We can sequence a cancer's DNA for reasonable comparative cost.

Device innovations:
1. Apply micro electronics to med devices. Nextel OCD injectible pacemaker.

2. Wireless in body sensors. Great for congestive heart failure. 40% reductions in hospitalizations.

Innovation is neither invention or discovery. Discovery leads to invention.

Innovation needs market pull. Then you have to do the tough thing and change human behavior. The process can take 15-20 years.

Since we don't gave luxury of 20 years how do we accelerate change?

How do we jailbreak healthcare?

After age of 70 Americans are on 14 medications/year.

Technology is part of solution. Quantified Self real time nudges to change long term behavior through micro choices.

We are incredibly bad at evaluating long term time based decisions but we can make choices every day.

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

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#hcidc leading the way in mhealth

Brian Dolan of MobiHealthNews moderating:

Ryan Sysko of WellDoc
David Zar of Mobisante
Cameron Powell of Airstrip Technologies
Jonathan Sackner-Bernstein of FDA

Kerry McDermott of FCC talking about Medical Body Area Networks.

Allow more mobility
Reduce infections
Improve data gathering

Expect to start in hospitals and migrate towards the home.
Need to see how they coexist

Jeffrey Shuren of FDA talking about making feasibility studies more feasible.

Challenges: spectrum coexistence connectivity and interoperability

FCC has special Licenses to enable testing. FDA is concerned with people safety.

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

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#hcidc spurring innovation

The cell reception in the auditorium at the Ronald Reagan Building is pretty poor so live posting from the West Wireless Health Institute's Health Care Innovation Day is difficult. My posts and tweets may not be that plentiful today.

Mohit Kaushal - MD Chief strategy officer - West Wireless Health

Sami Hamade - Aberdare Ventures
Bradley Merrill-Thompson. - mHealth regulatory coalition
Tom Watlington CEO Sotera Wireless
Bakul Patel - policy advisor FDA

510(k) applications suggest that more effort is going in to maintaining solutions and incremental change rather than new innovations.

Disruption does not come from established players.

Bakul - don't create new products for their own sake. Create then to solve real problems. Bradley - healthcare is constant change of policy and regulations. Dint expect stability.

Transparency on current regulations. Requires dialogue. Don't rely on one opinion from the FDA.

Regulation create barriers which brings benefits to businesses that have passed the barrier. Comparison of consumer electronics v device manufacturers. [Ed: how does that stand when Apple is highly profitable in CE markets]

Sami - sometimes we lose sight of patient as we seek to eliminate risk and increase safety.

Tom - disruptive innovation should make complex things simpler.

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

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Health Reform and the possibility of compromise?

Last night I had the opportunity to attend the Stevenson University Baltimore Speakers Series. The event took place at the Meyerhoff in downtown Baltimore.

The speakers were Karl Rove and Howard Dean. It was a great event. Things got particularly heated - in a good natured way - when the topic shifted to Health Care. What was fascinating is listening to who was arguing what.

You had Govenor Dean putting forward a common sense proposal for Tort Reform that used arbitration panels and had the outcome of the panel admissible in court.

You then had Karl Rove arguing that small companies should have access to the same group rates that large companies benefit from. He also argued that individuals should be able to go and purchase health insurance and have that portable as they move between companies and across states. Isn't this pretty much what the insurance reform in the Affordable Care Act sets out to do with the creation of Insurance Exchanges?

Karl Rove also pushed for selling Insurance across state lines. Governor Dean did not agree with that but then that is the difference between small states like Vermont and massive states like Texas.

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Twitter - Treat the Real time stream like water. Be a Utility and not a media company

THere is a great guest post on TechCrunch by Nova Spivack:  How Twitter Can Save $50 Million: Forget TweetDeck, And Go Freemium On Its API

This is a must read article. I agree that Twitter seems to be losing it's way at the moment. The current uncertainty around TweetDeck crystalizes this issue. 

I think Nova is on to something with the idea of a Freemium API. It creates a scenario where there are known costs of entry for startups that are based around a simple cost calculation.  

I also agree that Twitter should look to the role of Gnip and bring the Twitter fire hose in house and monetize that for companies that want to work with that flood of data.  

However, I have been using Twitter for more than four years and believe that there is a third option to include in this Freemium model. I use Twitter every day. It is an invaluable resource. I would welcome an option where individuals could choose a Freemium account option with Twitter and be able to op out of the Ad Stream at the Twitter source. Then, regardless of where or how I access Twitter, I receive a "clean" feed. 

Without the personal Freemium option Twitter may inadvertently discourage use of their own platform. Under Nova's Service Provider Freemium model I might pay to use TweetDeck to get a "clean" ad free Twitter feed but if I go and sign in to Twitter's web client I find my stream has Twitter's Ads filtering in to the stream. Let's have ann option to opt out of the Ad stream. 

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AMC Theaters jettisons loyal customers - AMC Stubs: A Case Study in loyalty program ineptitude

A friend has been a member of AMC's MovieWatcher Rewards Program for a number of years. As a frequent movie goer it was good to get discounts for tickets and special offers on concessions. But all that has changed.

AMC is a great case study on how to alienate your loyal customers.  Here is a tale from a MovieWatcher Reward program member.

During the winter we don't get to go to the movies that often so imagine our surprise turn up at the theater after 10 weeks away and the MovieWatcher Reward card doesn't work. There had been nothing in the mail. No email. Nothing at the theater for a few months before the program switched over. Not even a ticket stub advising that the MoveWatcher program was being switched to this completely inept AMC Stubs program. One that you have to pay $12 to join.

So after a trip to the cinema where our moviewatcher card was rejected by the automatic kiosks we went home and looked up the AMC Stubs site. We tried to register but the process locked up and it was impossible to complete a registration. So we sent an email.  

A few weeks later an envelope arrived in the mail offering a free card. Great! A card was included and it was already activated.  We were encouraged to go online sign up.  However, there were no instructions on how to register a card. It appears they may have realized this oversight and added a link on the home page to register a card.

So we created an account. But no email arrived. when emails are sent, if they arrive they take about an hour to arrive.

We had to pay $12 for the card and the process yielded an error. We still got charged though.

We have had to register our account three times because the process doesn't appear to complete. 

When we fail to get in to the system we used the "Forgot Password" option but the email address we had used was not recognized.

Isn't the idea of a loyalty or rewards program that you reward your loyal customers in order to keep them coming back? What AMC has done with Stubs is create a frustrating web site that is painful to use. There appears to be no way to check your account number to see what your card number is. The technology behind AMC Stubs is inadequate and seems to fail at every opportunity. If you submit a help request on the site through the contact us page it encourages you to "Email Us". You would think they would actually make that a link that did something. The link to send feedback seems to be focused on issues with specific movie theaters and not the web site. 

We are not alone in the frustration and dissatisfaction with AMC Stubs. People were happy with MoiveWatcher Rewards and don't want to pay for the privilege of being a loyal customer. The site is setup to make interacting with the reward program a painful experience. There is a Facebook page that reflects the level of unhappiness:  https://www.facebook.com/pages/AMC-Theatres-Boycott-We-Wont-Pay-12-Stubs-Membership-Fee/129799293757988?sk=wall

The AMC site on getsatisfaction.com also reflects the poor view of this program: http://getsatisfaction.com/amc_theatres/topics/amc_stubs_should_be_phased_out_before_its_phased_in

http://getsatisfaction.com/amc_theatres/topics/amc_stubs_website_wont_let_me_log_in

http://getsatisfaction.com/amc_theatres/topics/moviewatcher_program_getting_replaced

Some Advice for AMC 

If AMC Stubs is really a loyalty rewards program then consider the steps outlined below if you implement major changes, or replace the program.

This advice will apply to any company planning a major change to a program that targets your regular customers.

First, if you are going to re-engineer a loyalty program and make loyal customers pay for the program at least make sure the technology works. 

Other things to do:

- Test the upgrade/cross-grade process that moves customers from the old program to the new program. Make sure it is simple and easy and works!

- Make sure a user with a membership on the old program can move in to the new program without requiring them to have received any special documentation or pre-issued cards. 

- make sure Account setup is quick, easy and robust.

- Password resets should be immediate. Even better let us link the account with our Facebook, Twitter, Google, AOL or Yahoo accounts.

- Let us see our Account number online.

- Let us link our account to a phone number like most food store loyalty programs. 

- Next time you announce major changes to a loyalty program make sure you post messages about this at all your theaters well before you switch the programs over. Three months advance warnings with teaser ads and posters would be a good start.

- Send your current program members emails and/or direct mail BEFORE you cut off the existing program.

- How about having cards available at the automated kiosks so that people can pick up a card, use it for a purchase and then go online afterwards to activate the card and have their purchase at the theater added in to their purchase history. 

- Consider adding a code to the ticket stub so that members can add a missed purchase online if they go to a theater and don't have their card, although if you allowed a phone number to be used as an identifier you wouldn't need to do this.

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Build Your Online Brand to Connect with Opportunity

I have been asked to give a presentation about Social Media at a networking event this week. I went back to a presentation I first put together in 2008 and updated it. My first presentation was "What Is It About Twitter?"

My latest presentation is "Build Your Online Brand to Connect With Opportunity"

The bottom line is that services and platforms are increasingly connected so establish your online identity and use it consistently across the different platforms. However, you can't be everywhere so decide which platforms are most important to you and which one you consider home. With that decision make sure you direct people back to your "home." For example, post on your blog and then add messages to Facebook, Linkedin and Twitter that point back to your blog post. You can use services like Posterous or Ping to make it easy to post to multiple locations.

Wherever possible use the same username or screen name across different services. This makes it easier for people to find you. 

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#mcitizensummit Disruption from Mobile

A Smartphone is smart because it gives access to the Internet. It is the sum of 3 prior disruptions:

1. Phone

2. Computer

3. Internet

The Smartphone puts all three in your hand.

Smartphones bring retail disruption. It is not the purchase it is the research that people can do in their hand as they walk the aisle. e.g. Which TV should I buy.

QRCodes as "Graffiti" Activists could attach to billboards to provide link to web pages that give an interpretation of the ad. eg. product owners political contributions. , green practices etc.

This can also be applied as a Layar Application using Augmented Reality to a real life location.

Can the Government use Developer Contests as an alternative to the RFP process?

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Mobile Data Privacy - WTF! #mcitizenSummit (Winning The Future)

Justin Brookman @justinbrookman - Director Consumer Privacy @ Center for Democracy and Technology talking about Privacy in the mobile domain.

Fair Information Practice Principles (FIPPs)

- Transparency

- Purpose Specification

- Data Minimization

- Use limitations

- Data Quality

- Individual Participation

- Security

- Accountability

But today we currently have:

- (Some) Transparency 

- Security

FTC Draft Privacy Report concepts:

- "Privacy by Design"

- Better transparency

- Simpler Choices

Legislation:

Bobby Rush: "Best Practices" Act

Kerry/McCain "Commercial Privacy Bill of Rights" Act

Stearns/Matheson "Consumer Privacy" Act

European Union is currently the gold standard for privacy. Even though not rigorously enforced.

US companies are increasingly pushing for baseline legislation in US to help for global transfer of data.

Shaun Daikon @AppPrivacy

How creepy is geolocation: http://redtape.msnbc.com/2011/04/just-how-creepy-is-creepy-a-test-drive.html

Check out Wall Street Journal's "What they Know Series"   http://2.healthca.mp/gsyhbj

50% of top apps share zip, age, gender.

Check out Future of Privacy Forum

Check out Carnegie Mellon Locaccino - fine grained privacy location information.

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#mcitizen MobileHealth #omhealth why it matters ( http://portal.sliderocket.com/AQGIE/mobilecitizen-mobilerx )

Malawi in 6 months the use of mobile phones expanded the treatment of TB by 2x while saving 1,000 hrs of travel time and $3,500 in fuel costs.

Great discussion about the future of mHealth.

We need to put the user/patient/consumer/citizen at the center of mHealth.

I come back to a couple of thoughts:

- There is no Behavior Change only better micro choices that accumulate to a long term change in behavior

- Health may be private but Wellness is Social

Some of the references I used in the discussions:

http://www.careverge.com - A local health application company. Doing some fascinating stuff to instrument our activities around health

Open Mobile Health Initiative - Follow my tweets for #omhealth as we develop the Open mHealth community

Food Apps for iPhone:
- http://www.fooducate.com
- http://www.shopwell.com/

Quantified Self - http://quantifiedself.com/It's all about self awareness and contextual relevance.

Check out a HealthCamp near you for more of these types of conversations: http://healthca.mp/calendar

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#mcitizensummit some thought provoking ideas - mCitizens and the political process

More people have iPhones than have toilets.

More people have mobile devices than have toothbrushes.

Now for the keynote discussion at the mCitizen Summit

Make Sure:
- Your website is mobile friendly.
- Your emails can be read on a smartphone

Use SMS with Group lists to make your on the ground teams more nimble.

Latinos are a significant segment in the upcoming election cycle and this is a group that predominantly uses cellphones. 10,000 latinos turn 18 every day. 21% of Latinos using mobiles for health.

The Over 50 segment are using iPads and iPod touches. This is changing their ability to interact.

Text messaging is a great way to reach low income segments.

Group SMS = GroupMe, GroupedIn, GroupFlier, FastSociety, Beluga... All were at #SXSW - puts power to organize at the citizen level.

If using Apps then make use of Push notifications. It allows users to control receipt and avoids annoying them.

http://blog.twittervotereport.com/ was used at last election to track activity at voting stations. check out: http://blog.twittervotereport.com/press/

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Thinking about Open mHealth (#omhealth) at #mcitizensummit

Today I am at the mCitizen Summit at Microsoft's Chevy Chase Offices. After coming from the Open mHealth Initiative meeting I have been thinking about the question "what is mHealth?"

To me: 

m = My 

But not My in isolation. mHealth is about Connected Health. No, not even connected health. It is interconnected Health.

As @3GDoctor pointed out "My" ignores the other 8 unique abilities of Mobile:

the 8 Unique Abilities of Mobile as the newest Mass Media:

1st – mobile is personal
2nd – mobile is permanently carried
3rd – mobile is always on
4th – mobile has a built-in payment channel
5th – mobile is available at the point of creative impulse
6th – mobile is most accurate at measuring its audience
7th – only mobile can capture the social context of consumption
8th – only mobile can offer augmented reality

 I think the 7th ability should actually be 

"only mobile can capture the social context of creation and consumption." For an example of this check out the new iPhone App from Color.  

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Open #mhealth consortium the opening session

More from the Open mHealth meeting in Washington DC. - Be warned these are Mostly my own views and observations ....

How do we create a collaborative community of developers and a learning community.
How do we share a library of reusable components with a meritocracy that enables submission of new components that enhance and extend the library.

mHealth will help to drive the change in culture around medical research. The exponential growth in data points that can be correlated and analyzed that will originate from ambient collection of Observations of Daily Living (ODL). Researchers will need to change from the traditional role of creating the data and then analyzing it to a role where they, like a fisherman, trawl the sea of data and harvest, and clean the data and then interpret and deduce learning from the data they have observed.

The larger issues of Health Reform are casting the Health IT agenda in to a broader context. There is no clear roadmap for involvement of mHealth in this agenda however the CMS Center for Innovation and the activities of the CTO Office at the Dept of HHS will be key places to start that process. Connect with the SHARPS - SHARPN, cognitive SHARP etc.
mHealth is not a Health IT issue - it is far broader than that.
How do we address the challenge of mapping ontologies, sharing and translating them.

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Open #mHealth Partnership Discussion. Where do we go from here?

The objectives of the first session in the afternoon at the Open mHealth initiative.

How can we "spread the word" by building partnerships. Is this a Public Private Partnership effort? Is this a Movement for Open Source, Open architecture or Distributed Health?

Examples: Harvard Up-to-Date program. Credible resource with feedback mechanism to improve. A Quasi Wikipedia?

Open mHealth is looking for a venue for community. How about HealthCamp?

"You don't herd cats you just run with a bowl of milk" 

Build a common architecture. 

Can we use the Linux model or the Eclipse Foundation model.  Open source needs to attract competitors to succeed.

Use a 501(c)3 as a fiscal sponsor. Create a consortium affiliated with the fiscal sponsor.

What are the benefits for the consumer/patient?

Provide an ability to capture, access and analyze information that is personally and contextually relevant and can be securely and easily shared under my control.

Benefits to the developer?

Provide a test platform that is replicable and extendable with reusable software that enables faster development and focus on higher level development and solution related issues.

Benefits to population managers?

Ability to aggregate information from their population that enables analysis and management.  

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Open #mHealth meeting - Washington DC #omhe followed by #mCitizen summit on Saturday

For the next two days I am participating in a working meeting with a great group of thought leaders involved in mHealth. Then, on Saturday I am attending the mCitizen summit. So, you have been warned. Watch out for a stream of tweets and posts over the next 3 days. 

I will be listening to the discussions and many of my notes will be my interpretation of those discussions and NOT a recording of quotes by the participants.

Thanks to the Kaiser Family Foundation for providing the space for this meeting at the Barbara Jordan Conference Center.

Deborah Estrin and Ida Sim have co-ordinated this meeting.

The Open mHealth initiative is seeking to put an open architecture in place - a reference implementation that others can leverage to deliver health solutions. The target is to build 1-3 real consumer oriented applications in 2011.

some of the participants:

- Chris Hall of HealthCentral

- Ralph Coates of CDC

- Steve Ondra of OSTP (The White House) 

- Doug Blough of Georgia Tech

- David Aylward of Ashoka

- Glenn Moy of California Healthcare Foundation

- Julia Hoffman of the VA

- 

- Juhan Sonin of MIT

- Brian Chapman of iDASH

-

- Myself of HealthCamp Foundation

- Keith Marsolo of Collaborative Chronic Care network - C3N - University of Cincinnati

- Michael Sied of C3N - University of Cincinnati

- Josh Mandel 0f SMARt at Harvard

- Daniel Myung of Dimagi

- Alan Viars of Videntity (@aviars)

- Mike Swiemik of UCLA

- Ali Emami of Microsoft HealthVault

- Umesh Madan of Microsoft Health Solutions

- Nadav Aharony of MIT

- Jyoti Pathak of 4th SHARP (Mayo)  

- 

- Paul Biondich of OpenMRS (Open Medical Record System)

- 

- Howard  of NSF

- Bob Evans of Google - Builder of a Quantified Self platform

- Aman Bhandari of HHS

- Bakul Patel of FDA

- Stacy Lindau of University of Chicago

- Mark Begale of Northwestern

- David Mohr of Northwestern

- Tony Wasserman of Open Source for America and Carnegie Mellon

- Jeremy S of HealthCentral/Johns Hopkins

- Susannah Fox of Pew Research Center (@susannahfox)

Session 1 - Identify Core Functional Requirements through Straw Apps.

Self Monitoring as input into self care treatment

- 1/3 of US deaths due to poor lifestyle behaviors.

- Self monitoring to support treatment adherence

- personal strategies  (self awareness - actions/triggers/correlations)

Use of "Narrow-waist" term. Narrow Waist of Hourglass Architecture.

Simple protocol: IP allowed servers and clients to talk to each other easily without re-engineering and central coordination and management.

Discussion: Functional Capabilities needed for Behavior Change

There have been lots of discussions about mHealth but no discussions about core open architecture.

Post-Partum Weight Loss. 

At 6 months post-artum mean retained weight is 11.8lbs. 25% retain more than 20lbs. This is a predictor of long term obesity.

Anti-Depression in Vets

14% of depression in Vets. Response to drug regimen. 60% with active drug and 30% with placebo.

Personal Discovery and Mapping of Asthma Triggers

Trigger discovery and monitoring. Learn form others, how to filter and augment data.

Spatial mapping of triggers.

Public Health Surveillance and Delivery.

I can see this effort need ing to tie in to the Rainbow button initiative.

Factors:

- Reputation / Credibility (include the crowd) / Trust / Authenticity

- high level objects

-- geospatial information

-- notifications

-- reminders

-- messages

-- Alerts

-- extensible structured data

-- 

"ecological momentary assessment" = gathering realtime real life data collection

It seems like we need a discussion about what APIs we need to enable mHealth solutions.

What are the open building blocks we need to enable mHealth Apps.

Let's start with the simple stuff we can predict and make sure we have standardized data formats. This implies we need a dictionary or directory to allow discovery of new formats. This can encourage semantic standardization. Isn't this just an extension of XML standards?

Let's leverage data models that have been previously developed. e.g. how to represent a person (what data attributes etc.)

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Passion drives us all. To @scrimshire it is about evoking memories through music. For me it is HealthCa.mp

This morning I signed in to Facebook and saw a post from one of my son's to the other talking about music.

Yesterday I was in a session analyzing a recent personality test and one thing that struck me was how Music came high in my list of interests. It seems that the apples don't fall far from the tree! My eldest son @scrimshire is following his passion in music. He helps run the WahWah45s record label in London and is a musician in his own right. He also writes and produces as well as DJing. 

To cut a long story short(er!) Adam wrote a great post on his blog at Scrimshire.com: STRONG MEMORIES – THIS IS WHAT MAKES YOU BUY MUSIC. Go and read it and then think about your passion. 

One of my passions is the HealthCamp Foundation where we help organize HealthCamp un-conferences to promote engagement in health. What has that got to do with Music? 

It is about the passion and the connection. 

It has been my privilege to meet so many passionate people on my journey in Health Care. Working to improve Health Care is about improving the lives of others and not just turning up for work. I think back to a recent HealthCamp in San Diego (http://www.healthcampsandiego.org). It was a Sunday and over 40 people gathered to discuss innovations around Health Care. During the wrap-up David Hale, probably better known at @lostonroute66 on twitter) performed a rendition of "My Little Data Shack" on his ukelele.

Whether it is music or health by bringing passion to what we do we create something that is lasting and memorable. That is something that is increasingly rare in this consumerist, throw-away world. 

So, if you are passionate about health and health care come and get involved in HealthCamp. You can donate to the HealthCamp Foundation and you can come along to a HealthCamp event by checking out the HealthCa.mp/calendar. People who have actively participated in these events have described them as "transformational",  "inspirational" and even "life changing."

Connect with your passion!

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Cisco - A Case of Consumers-aren't-us

The news has broken that Cicso is exiting it's consumer businesses to focus on the Enterprise Markets that are at the roots of it's business. See TechCrunch for info. Cisco's DNA is enterprise Networking. A victim of this re-alignment is the Flip Video Cam. Something that now proves that the Pure Digital Acquisition was an expensive $590M mistake.

The Flip Video Camera was a nice product. Simple to use. However, it was at odds with Cisco's Networked DNA. The Camera had to be connected to a PC in order to share the videos. 

The Smartphone and iOS devices have won this battle. The iPod Touch looks like the best replacement for the Flip Cam. The advantage of Wi-Fi connectivity allows videos and photos to be quickly uploaded any time you are within reach of an accessible Wi-Fi network or a ClearSpot or Mi-Fi device.

Wouldn't the Eye-Fi SD Card have been more closely aligned with Cisco's network DNA? The Eye-Fi card Wi-Fi enables any camera that takes an SD Card.

Cisco will certainly be more focused supporting their enterprise customers. It won't mean the end of Cisco products coming in to the home but it is more likely that those products will be engineered to meet the demands of an enterprise and be badged with a more recognizable consumer market brand. For Cisco it is a sensible decision. The Flip Cam was an anomaly at Cisco. A popular consumer product in it's hey day in a range of products that are purchased, not by consumers, but by Enterprise IT and Communications Managers.

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@aviars being interviewed on channel 13

@aviars being interviews about the Caps coming to 1st Mariner Arena

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

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@aviars and the cameraman from @wjz taking a closeup of beer being poured @stackhouse

We are at the Stackhouse on Hudson Street in Baltimore talking some business ideas when TV came in to do some interviews about the Washington Capitals coming to play at the First Mariner Arena.

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

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#kpcth in the amazing telepresence room at Kaiser's new center for health conversation in Washington DC

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

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#kpcth iPads are everywhere

The iPad is the device that will have the biggest impact on changing to an e-culture in health. Let's hope it encourages a move from paper to digital but without just copying the paper and paper oriented processes. This is an opportunity for health care re-invention. Let's seize that opportunity with both hands!

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

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#kpcth @daniellecass showing offend welcome area

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

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#kpcth surgery theater to role play office visit scenarios

Fascinating example of how to mesh primary care with video and other technology to deliver better real time care.

IMG_0467.MOV Watch on Posterous

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

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#kpcth Q&A session

100k join KP.org each month
50% usage Of KP.org
Leads to a reduction in office visits
But with more interactions with your care team.

KP is looking at mobility. Eg. How to know what cell phones members have. The center is part of a push to achieve better east coast visibility. KP is proud of achieving 30% lower Deaths from heart disease.

10m emails per year. If that was nationwide that equates to $70b of productivity savings.

Accessibility - while at work is part of the integrated secret sauce.

The center for total health is attached to 200sq.ft of advanced medical hub. Lab, radiology everything except an in-patient space all in one place. Treatment sooner is one of the best ways to reduce cost in healthcare. Planning 5 similar hubs in mid-Atlantic area. There are multiple hub types. Eg. Storefront hubs.

How can this expand to other large communities. Te lessons of CA have been applied to mid Atlantic in 2 years. KP believes it can take lessons from mid Atlantic to other communities in a year.

Integration brings synergies. Connectivity enables synergies remotely.

35 of 37 KP hospitals are HIMSS level 7 qualified - ie they are paperless. MRI's and everything else is stored electronically and available 24x7.

The average KP member stays for 17 years. That is greater than most other health plans.

What events would be great to have at the center?

HealthCamp foundation is working with Kaiser Permanente to put on healthca.mp/dc on June 8th. We all have to work together to reinvent healthcare. The Kaiser Permanente Center for Total Health is a venue for those conversations.

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

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#kpcth I am here for a busy day of learning, planning and connecting for HealthCamp at the Kaiser Permanente Center For Total Health

Today I am in Washington DC as a guest of Kaiser Permanente. The event is the grand opening of the Center for Total Health at 700 2nd St, NW. 

The center has been designed as a place for health conversations. It will be a perfect location for HealthCa.mp/dc on 6.8.11. With high speed wireless access, telepresence and plenty of places to meet and talk this is a great venue for conversations and connections to further healthier living. Check out the web site at: http://www.centerfortotalhealth.org/.

Kaiser Permanente has, and is, a great sponsor of HealthCamp. Why? Because our objectives are aligned. There is a deep passion to help people achieve healthier and more rewarding lives. HealthCamp wants get patients and consumers the tools to help them manage their own health. That is not just a question of tools and technology but also education and awareness about food, nutrition and exercise. Real Health Care reform demands that we equip ourselves with the knowledge to eat healthier and understand our bodies and the tools to measure our health. The days of being measured once a year by the doctor have to be over. Health is a partnership - a team sport - a social activity.

Today should be a fascinating experience. So watch out for a stream of tweets and blog posts.

I am going to capture the tweet stream (the hashtag is #kpcth) using CoverItLive.

 

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mscrimshire@gmail.com has shared something with you

mscrimshire@gmail.com would like to share this photo with you.

#hcct HealthCampCT aka healthca.mp/ct @Yale took place on 4.2.11 and hashtag generated over 1M impressions via Twitter see the normal sized image here: http://yfrog.com/h3n41lp?sms_ss=email&at_xt=4d99b4ff77728b06%2C0

yfrog

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#hcct cup cakes look delicious

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

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#hcct great food for lunch

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

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#hcct te empty agenda will soon be fillers

Http://healthca.mp/ct/schedule

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

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#hcct the wall goes up. Are you ready to fill it in?

Here are the finishing touches to the agenda wall. This will be transcribed to an online schedule at http://healthca.mp/ct/schedule

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

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