80's meets 2012 at Christmas

Wham meets PSY

This is so wrong but so right. It captures the essence of Christmas in the 80's and today.

Merry Christmas
Mark S
B: http://ekive.blogspot.com

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Dealing with a weird problem with Mail.app and Contacts.app using different AddressBook files on OSX Mountain Lion

Recently I had to switch my Apple MacBook. I used the Apple Migration Utility to transfer my profile from one machine to another. This worked fine and everything seemed to be okay. However After a week or so of using the new machine there was one strange problem: Mail.app would only find email addresses from the recent list. I found that I couldn't lookup email addresses from my AddressBook in the Contacts app. So how to fix this? This is the story. It was quite a challenge.

Whenever I get a problem like this I resort to "The Google" and see if others have had a similar problem. There were plenty of reports of problems with syncing AddressBook with iCloud, However, my iCloud syncing and Facebook integration was all working fine. Just to be certain I first did a backup of my AddressBook from the Contacts app. I recommend doing this before any major changes to your Contacts App since your contact database is often one of your most valuable resources.

To do the backup I went to Contacts and did File...Export...Contacts Archive to create the backup.

I followed some of the advice online and tried to reset my Contacts database. I quit the Contacts.app and Mail.app. I then went to System Preferences...iCloud and switched off iCloud Contacts syncing.  

I opened Contacts.app and checked my contacts were still there. All good so far. But opening Mail.App there was no change. I still couldn't get mail to lookup email addresses for any of my contacts.

I closed both Contacts and Mail.app and went back to System Preferences...iCloud and switched contact syncing back on. After waiting for iCloud to re-sync with Contacts I opened Mail.app and Contacts. No change. Mail.app would still not find any of my contacts email addresses.

I then went to Mail.app and checked out the Address Panel. There were only two AddressBook entries. The first was for Apple and the second was My AddressBook card. 

I tried adding an email address from Mail.app in to the AddressBook. This allowed the email address to found in Mail.app but the entry did not show up in the Contacts.app. At this point it was obvious that the two applications were not talking to each other. They were working off different copies of the AddressBook database.

At this point it was time to take a look under the covers. Time to  open up Finder and take a look through my user profile Library folder (~/Library).

My first visit was to ~/Library/Application Support/AddressBook. 

The AddressBook-v22.abcddb file was large and looked to be too big to have just 2 records in it.

I went back to Google to search for some more ideas.  One article mentioned the Containers folder in ~/Library. This is apparently part of the sandboxing that has been implemented in OS X Mountain Lion.

I took a look in ~/Library/Containers and found a com.apple.mail folder. 

This folder had a Container.plist file and a Data folder.

The Data Folder held two Folders:

- Documents

- Library

The Library folder was really interesting it had a number of folders that mimicked the folders in the ~/Library folder:

Application Scripts

Application Support

Caches

Cookies

Images

LaunchAgents

Logs

Mail

Mail Downloads

Notes

Preferences

Saved Application State

SyncedPreferences

I looked in the Application Support folder and found:

AddressBook

CrashReporter

Mail

SyncServices 

I looked in the AddressBook folder and found the following files and folders:

AddressBook-v22.abcddb

Configuration.plist

Images

MailRecents-v4.abcdmr

Metadata

The contents of the Images and Metadata folders matched the AddressBook entries that were being used by Mail.app.

Finally I had conclusive proof that Mail.app was using a different AddressBook file and I had found the database it was using. The next step was to figure out a way to fix it. The challenge is that there is nothing in Mail.app's preferences to force it to use a different contacts database and the only way to re-install Mail.app is to re-install OS X. I wasn't ready to do that. So there must be another way.

After taking copies of both AddressBook folders I moved the AddressBook folder in ~/Library/Containers/com.apple.mail/Data/Library/Application Support/

to AddressBook_broken inside the Application Support folder.

I then went to ~/Library/Application Support in Finder and created an Alias of the AddressBook Folder. I then moved it to the ~/Library/Containers/com.apple.mail/Data/Library/Application Support/ folder and renamed it to remove the " alias" in the folder name.

I then tried Mail.app but no luck. As I suspected Aliases don't work very well. It was time to resort to Terminal. First I deleted the Alias that wasn't working

I decided to try a symbolic link. A quick Google to get the syntax right and the following steps worked:

cd ~/Library/Containers/com.apple.mail/Data/Library/Application\ Support/

ln ln -s ~/Library/Application\ Support/AddressBook AddressBook

I then fired up Contacts.app and Mail.app. It worked! Contacts was using the AddressBook database and Mail.app was too.  To make sure everything was okay I added an email address using mail.app. I switched to Contacts.app and the entry appeared there too.  I then edited the entry in Contacts.app and added a picture to the entry.

While I am at this point I have to point out the retarded change in Contacts.app in the handling of pictures. in the Lion version of AddressBook you could simply drop a picture on to the Picture Frame in an AddressBook Contact Card and the card would be updated. In Mountain Lion it is a major step backward in usability. You now have to switch in to edit mode for the contact record. Then you have to go and edit the picture. Then you have to select the "Recents" tab. Finally you can drag and drop a picture in to the edit window and select Done. 

After doing this and saving the Contact Card I went back to Mail.app and made sure the preference...Viewing tab had the option set to "show contact photos in the message list."

Now the updated photo displayed in Mail.app against an email from the addressee. This is a really useful feature because when you are scanning through a list of emails it is easy to spot the emails from people you are interested if you have added a picture to their contact card because you will see that picture next to the email message instead of the grey head and shoulders profile.

While I was troubleshooting this problem I did call Apple. They were incredibly efficient. They called back exactly when I scheduled them to. Within minutes after discussing the issue with the Support Rep (I had solved the problem at this point - but I was concerned that an update to OS X might break it)  I was connected within two minutes to the next level expert. It seemed I had solved the problem. However, there seems to be a problem lurking here. It shouldn't be this hard. The fix is definitely beyond the scope of many users. 

The support rep gave me their contact details and when I got home I found an email address asking if I could document the steps I went through. So Glen, this is for you.... Rather than keep the solution to myself I have written this up and posted the information to my blog where  others may find it and hopefully give a clue to solve the problem if others experience this.

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Pre-#SXSW13 HealthCampAustin planning for Thursday March 7th, 2013 - Are you in?

I need to see if HealthCampers are interested in taking part in a HealthCamp in Austin on Thursday March 7th, 2013. 

We still have a lot of details to pull together but I am pretty sure I have a location lined up on River Place Boulevard in Austin. What I need to do is to see who is interested in arriving in Austin before SXSW to take part in HealthCamp.  

I would like to make the theme for the day "Big Data delivering insights for personal health"

So the big question is who is in?

Go to the survey link and let us know what your level of interest is: Survey - HealthCamp Austin - Thursday March 7th, 2013 - prior to SXSW Interactive - Are You in?

Let's kick SXSW off in a big way with an exciting HealthCamp event!

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#BlueButton - Because it just makes total sense. Get yours today! #ABBI

I have been a supporter of the BlueButton from the beginning.
Check out this really cute video made by a group of kids that demonstrates the benefits of the BlueButton and the real-life problems it can solve.

BlueButton - it could save your life....

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#PIPHCA - Reg4All Registries for all diseases @sharonfterry

Registries for all presented by @sharonfterry

Industry sponsored registries exist. Time consuming and costly to build.

We need people and their data.

Biomedical research and healthcare are laggin in entering the INFORMATION age.

Individuals are collecting information in a fragmented fashion.

Reg4All merges:

- Disease InfoSearch

- Trials Finder

Trials Finder enables patient registration. 

Enables self-reported medical information

A gamified survey 

- Common Data Elements - Measure in a consistent way across diseases.

- Add Disease Specific information.

Engagement is critical - but why will people engage?

Data Today for Solutions Tomorrow.

The question comes down to why will people engage and how will they trust this group?

Drive this from the disease advocacy organizations.

The unique element is to to add privacy controls via Private Access. https://www.privateaccess.info

"We try to do too many things with blanket access - We have to be granular and let people give permission" 

"People need to reclaim their health"

Go for all 13,000 diseases - the co-morbidity info will be astounding

The winners for this challenge will be announced on December 12th. - Watch out for it on: www.collaborateactivate.com or www.partnersinpatienthealth.com

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#pphca - Partners in Patient Health - Flu Near You

Flu Near You - Vaccine Preventable Diseases remain an issue.

People distrust vaccines but because of their success people underestimate the impact of the diseases they prevent.

The CDC estimates that the Flu costs $10.4B each year in medical costs.

Participatory Health needs to engage the public in Public Health.

Participatory surveillance engages the public in monitoring activities.

Register by phone or web.Surveys received via email and take less than 10 seconds to complete.

Flu Near You helps you find sources for vaccine.

Flu Near You reports back on your local community. People like this local knowledge.

People like the mobile app. They like to be able to change location.

http://flunearyou.org

Already 9,000 users. Piloted in San Francisco. 80,000 surveys completed.

Partnering with LabCorp to enable local testing.

This app is designed to scale globally and to expand to other diseases beyond flu.

People find the map is invaluable. They like to interact with the map.

Initial engagement will be the challenge. One suggestion was to use the Boy and Girl scout organizations to drive family engagement. eg. a public health awareness badge.

Can people identify if they are in a high risk group? This done via Vaccine Finder where high risk groups are identified so that the right vaccine can be identified.

FluNearYou is different from traditional reporting methods. Traditional methods use reporting from HealthCare professionals. FlueNearYou offers earlier detection opportunities.

Puerto Rico is funding development for other diseases.

The real time aspect of this app really helps detection and treatment.

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Collaborate | Activate Innovation Challenge 21st Century Braintrust

21st Century Braintrust presents a proposal for a PR campaign focused on Brain Health.

PR towards research community and also towards the public.

Promoting citizen scientists.
http://collaborate-activate.eventbrite.com / http://www.partnersinpatienthealth.com

Boomers are self-trackers. We are not looking to self-diagnose but to self-measure.

21st C Braintrust is about enabling apps to be able to measure Brain Health in the same way we measure physical health.

How do we normalize behavior that puts brain health to the fore. This is the opposite of tobacco cessation where the use of tobacco was de-normalized.

THe VA and the Sports Community are very interested in developments in this field.

How do we increase the scientific communities confidence in self-reported data.

21CBT is looking to establish standards that increase that level of confidence.

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Partnership in patient health finalists presentations

https://collaborate-activate.eventbrite.com/

I am at the partnership in patient health session at the Newseum.

To see 4 finalists duke it out

It is good to see a few others with walking gallery jackets 

Mark Scrimshire

B: http://ekive.blogspot.com

....Sent from my iPhone

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#Sandy response let's help @unclenate / @healthcarewen /@faircaremd by Working together. It's what we do.

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#Sandy response let's help @unclenate / @healthcarewen /@faircaremd by Working together. It's what we do.

Nate DiNiro is trying to pull together  some "digital volunteer" resources for #Sandy response; believe me that things are not completely under control.

Nate Has been working on coordinating crisis response to healthcare and long-term care since Friday. 

He could use some folks who can volunteer some time to curate resources, validate info, coordinate resources, etc... He has been working with Wen Dombrowski and Alex Fair to potentially coordinate come additional hackathons and a NYC CrisisCamp.

I am passing on Nate's message and urging the HealthCamp community to see if we can get more volunteers...

Hey Friends,

Humanity Road is partnering with CrisisCommons to fulfill a request from Federal response agencies to collect operational status information from Hospitals and Long Term Care Facilities in areas affected by Hurricane Sandy. Please share your contact information if you're willing to volunteer time to support maintenance of an up-to-date list and map of Hospital and Long-Term Care facilities.

Please email volunteersandy@crisiscommons.org if you have any questions... Thanks!

This information is being captured for the sole purpose of coordinating volunteers, it will not be used in any other way.

https://docs.google.com/spreadsheet/viewform?formkey=dFk2Nk5TZnhxanczZDk0YTJ5cUp5dkE6MQ

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#Health2STAT HealthIT.gov cybersecurity raises hackles in the audience.

The Cyber Security game from the ONC raised some hackels in the audience when it indicated that the right answer to a patient request to copy their patient records on to a USB they provided was the WRONG answer. Instead the recommendation is for the practice to provide the data on a USB drive they provide.

This seems bizarre. What is driving that line of thought. If you follow this to the logical conclusion then BlueButton data should be encrypted and shouldn't be able to be requested by the patient and returned in real time.

May be the driver of this decision was to prevent trojan horse or malware being introduced to the practice. But if this is not the issue then this seems to be a crazy road block that does not enhance data security from the patient perspective. Copying the data to a patient's USB drive has to be more secure than printing the record and paper and handing to the patient.

Thoughts?

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#Health2STAT Cyber secure your medical practice - a training game on HealthIT.Gov

More from #Health2STAT in Bethesda

A presentation from the Office of the National Coordinator for Health IT

Avatar Based Security Training Game (Co-Speaker Presentation)

Will Phelps, MS, is the IT Security Specialist at the U.S. Department of Health and Human Services Office of the National Coordinator for Health Information Technology (ONC), and currently works in the Office of the Chief Privacy Officer (OCPO) where he leads several projects on mobile device security and risk management and mitigation for physician practices. He has more than 11 years of extensive experience in leading major tasks and programs for the federal government, and commercial clients. His background includes experience in leading the design, development and implementation of high-performance technology solutions. He has created and managed corporate and government-wide information technology, security, compliance, assurance and risk management programs as well as has implemented these initiatives across private and government organizations. His information security experience encompasses HIPAA, NIST, DITSCAP, FISMA, FISCAM, OMB and other federal guidance requirements for information security.

 

Laura Rosas serves as a Privacy and Security Professional at the Office of the National Coordinator for Health IT, Office of the Chief Privacy Officer (OCPO). She has broad and deep experience in healthcare, especially public health, privacy and security, health information technology, Meaningful Use, EHRs, HIE, health policy, management and patient safety. In her role with OCPO, she provides expertise on the privacy and security issues related to EHR implementation. She serves as a subject matter expert and ONC lead on the REC Community of Practice. She also leads on strategy for provider outreach, education and training on privacy and security. She has been instrumental in co-leading the development of security-focused, interactive video training games to engage healthcare practitioners and educate them on security awareness. 

Cybersecure your medical practice.

Developed a series of games to train Providers and Staff.

Information Security Awareness is a requirement of HIPAA

Teaches provides safe best practices.

The game is available on HealthIT.gov

The game looks to be fun and informative but I thought I spotted an error in one of the answers. :)

Play the Game Now

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#Health2STAT @craigstoltz talking about Stopbullying.gov a project supported by @MichelleObama and the White House

More from #Health2STAT

Stopbullying.gov

Stopbullying.gov was launched in March 2011 at the White House Council on Bullying Prevention, as the result of a high-level administration initiative involving both the President and First Lady. A partnership between HHS and the Department of Education, it was originally conceived as a one-stop-shop for information about bullying in schools and communities. After feedback to the launch showed a desire for more practical information, it was re-launched in April 2012 with a more practical, how-to-handle-bullying focus. In September it gained a blog and an upgraded kids section featuring games and videos. The site receives about 250,000 visits per month. Its Facebook page has been liked over 40,000 times and its Twitter feed has over 17,000 followers.
Craig Stoltz is the Content Team Leader for the Web Communications Division at the U.S. Department of Health and Human Services (HHS). In this position, he leads the team of content managers that produce such sites as healthcare.gov, flu.gov, vaccines.gov, foodsafety.gov, stopmedicarefraud.gov, and stopbullying.gov. Each of these sites combines resources from across HHS and in some cases across the federal government, creating communication and coordination challenges among traditionally siloed organizations. He also leads the Division’s plain language efforts.

StopBullying.gov pull information from various government sources to provide all resources from across Government that addresses Bullying.

Content is targeted towards Parents and Teachers.

They found that there weren't many resources around Cyber-Bullying. This was added.

These resources address:

- What is bullying
- Who is at risk
- How to prevent bullying

"Be more than a bystander" is one area of the site that is targeted to kids. Advices kids how they can help.

Some great Multimedia resources - uses YouTube and other resources.

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#Health2STAT Think Global - Act Mobile - Alison Pilsner - @InfieldHealth

More from #Health2STAT

Think Global, Act Mobile: How mobile technologies are helping to change the face of global public health

There is a growing body of evidence that demonstrates the potential of mobile communications to drastically improve healthcare services, even in some of the most remote and poverty-stricken locations worldwide. In many parts of the world, epidemics, natural disasters, and a shortage of healthcare workers continue to present challenges; however, over the last decade, the explosive growth of mobile communications offers a new hope for the promotion of quality healthcare. This presentation will focus on how mobile technologies have helped impact health awareness, outcomes, and behavior change in the developing world.

Alison Pilsner, MPH, CPH, CHES is a Health Strategist at Infield Health with a diverse background of experiences using emerging technologies, social media, and mobile solutions as a way to improve reach and engagement of public health interventions and campaigns. A recent Boulder, CO, transplant from Washington, DC, Alison is primarily responsible for matching Infield products to the needs of health institutions. Alison was inspired to pursue a career in public health with a goal of developing products and better models of prevention to empower everyone to take control of their health. Her recent experience includes serving as the eHealth Ambassador for the National Cancer Institute's (NCI) Smokefree.gov suite of projects where she consulted on the use of emerging technologies and mobile solutions. Fluent in Spanish, Alison serves as an affiliate faculty member for the Misión de Amistad global healthcare mission in Central/South America several times a year. In addition, Alison sits on the Advisory Board for My Bridge 4 Life™. Alison completed a Cancer Research Training Award Fellowship at the NCI in Health communication and Informatics and a LEND Fellowship in Neurodevelopmental Disabilities at the University of Pittsburgh. Alison holds both an MPH and BS from the University of Pittsburgh, is CHES certified, and was a member of the charter class to receive the Certified in Public Health (CPH) credential in 2008.

Mobile Technology is reshaping the developing world.

Mobile reach further in to developing countries than any other technology.

There are now 1B smartphones world wide. That's 15% of the world population.

Here are some examples:

SMS for Life

Reduced clinics running out of meds from 90% to 6% during a pilot program. Tanzania is now deploying to 5,000 health facilities. IBM and Vodafone piloted this.

SMS For Life prompts health staff to check their supplies of anti-malaria medications on a weekly basis.

ChildCount - improves child health in Kenya.

Measurements transmission times were reduced from 2-3 months to 2-3 minutes.

64,800 times faster than paper-based systems.

CommCareHQ.

India national rural health mission. Trained 3/4M health activists and educates then via phone.

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More from #Health2STAT Michelle Murray - Patient Support Groups on Facebook

More from #Health2STAT

http://www.meetup.com/DC-MD-VA-Health-2-0/events/45832242/

Facebook Hospital Patient Support Groups

Michelle Murray will discuss the University of Maryland Medical Center’s (UMMC) Facebook Patient Support groups which were launched in March 2011. She’ll discuss what they offer to UMMC patients – a chance to interact with each other and offer support in a private group environment – how these groups have grown considerably since the launch date, and how the groups are managed.

Michelle Murray serves as the Assistant Web Site Editor for the University of Maryland Medical Center’s award-winning umm.edu site. In addition to managing and developing content for the site, Michelle also manages the Medical Center’s Facebook page, which has added more than 18,000 fans under her leadership. In addition, Michelle also manages two Facebook pages for the Songwriter’s Association of Washington and hosts and produces “The Open Stage,” an online radio show on BlogTalk Radio.

These were an outgrowth of real life groups.

- Liver Transplant
- Trauma Survivors

Wanted to expand the reach of patient support services.

These groups help answer questions like:

- Does this happen to anyone else
- Provide encouragement and advice

Groups are easy to create and manage.

Reaches people where they are.
Overcomes the challenges of long commutes.

Things to do:

- Monitor daily
- Respond to questions and concerns

Facebook.com/medcenter

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#Health2STAT in Bethesda. Great to see @kaitbroe @lostonroute66 and many more. Thanks to @Aquilent for their efforts hosting this event

This evening I am at #Health2STAT at the Barking Dog in Bethesda. This should be another lively evening. We have a series of rapid fire 5 minute presentations.

If you are interested in future STAT events then check out Meetup.com - http://www.meetup.com/DC-MD-VA-Health-2-0/events/45832242/

@MikeTock starts by talking about the support work @Aquilent does to support the Children's Inn at the National Institutes of Health

I am interested to hear from Jim Blaigaich talking about "What Type of Cloud?"

3) NCATS in the Cloud

 Jim Blagaich has been the CIO at the National Center for Advancing Translation Sciences (NCATS) since Dec. 2011. He provides the technology vision and leadership in the development and governance of the NCATS information technology (IT) program. He has 20 years of experience in Federal information technology operations and planning. Prior to the establishment of the NCATS, he was the CIO at the National Center for Research Resources since April, 2008. He held a position at the Center for Scientific Review (CSR), where he led the Planning, Policy, and Budgeting efforts.  Before joining the CSR, he was a Defense Information Manager, Access to Care, ASD (HA) TRICARE, where he managed enrollment, care authorization, health survey, and patient appointment-related software applications for 150+ hospitals. In addition, he has 7 years' experience in implementing hospital information systems and telemedicine applications. He holds s an MBA from Frostburg University (2006).

National Center for Advancing Transitional Services (NCATS) advance the development, testing and implementation of diagnostics and Therapeutics.

Accelerating transition of Research to the bedside.

Launched a site in 6 weeks. Purpose was to communicate the role of NCATS to the public.

They faced a lot of opposition: Our hosting is better, it will cost more and it is not secure. 

They overcame all of that.

Now NCATS uses Amazon Web Services.

Use Active Directory - but not as simple as they expected.

Things to learn when experimenting in the cloud:

:

- Organization opposition and pain points

- Cost

- Security Policies

- Network Configuration 

- Performance

Experiment in the cloud on a low impact system.

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#HCKC and #Cinderblocks Tweetreach

The First TweetReach Report use #Cinderblock as part of the search term for the Partnership WITH Patients Summit and HealthCa.mp/KansasCity event this past weekend. It appears that Twitter doesn't consider #Cinderblock and #Cinderblocks to be the same thing.
So here is a new report that includes both Hashtags.

TweetReach_hckc_or_healthca_mp_or_cinderblocks_or_cinderblock.pdf Download this file

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Here is the TweetReach Report for Partnership WITH Patients and HealthCampKansasCity #Cinderblocks #HCKC

Here is the Tweetreach report from this weekend's Partnership with Patients Summit and HealthCa.mp/KansasCity at Cerner in KansasCity, MO.

902 Tweets,129 Contributors,
132,864 Accounts Reached,
1,842,782 impressiona

TweetReach_hckc_or_healthca_mp_or_cinderblock.pdf Download this file

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#HCKC Recap from HealthCampKansasCity on 9/23 @Cerner as part of Partnership WITH Patients Summit aka #Cinderblocks w/@DaveCorn

This is the the recap deck I put together at the end of HealthCa.mp/KansasCity. It was a fascinating day where we serendipitously had Dave Conthwaite (@Davecorn) drop in as he swam down the Missouri River. This was 635 miles of a 1,000 mile journey.

http://www.slideshare.net/ekivemark/health-camp-kansas-city-wrap-up

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#cinderblocks #hckc themes for the wrap up:

Next steps:

Ideas for Partnership with/for Patients:

Respect for Patients at the table:

Patient voice to make clinical trials better:

Price transparency:

Breaking boundaries:

Dying in peace:

Empowering 100M people who live with chronic pain:

Psychiatric Survivors:

Twitter for health and problem solving in patient communities

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

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#hckc #cinderblocks a little bit of chaos #swim1000 @davecorn joins HealthCamp

Dave is 635 miles of a 1,000 mile swim and paddle down the Missouri River. He is supporting copperfield foundation for breast cancer awareness.

This is a perfect example of the serendipity that happens at HealthCamp! Checkout @swim1000 @davecorn

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

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#hckc #cinderblocks partnership with patients

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

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#hckc #cinderblocks actions - next steps

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

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#Cinderblocks #HCKC Partnership WITH Patients and FOR Patients - the next steps

@ReginaHolliday and Pat Mastors leading the next session to discuss the next steps for Partnership With Patients.

Don Berwick  set a goal 20% reduction in Re-Admissions and 40% reduction in Hospital Acquired Infections (HAI)

Partnership FOR Patients is a CMS initiative.

Partnership WITH Patients is a patient initiative.

We need to recognize Harmed Patients and encourage their involvement. A Funding issue.

Patients with Disparities need access.

Recognize Diversity.

Can we get the rules changed so that the IOM can compensate patients for their involvement.  

When we talk about Patients we are always talking about Patient Family Engagement - i.e. including the caregivers.

The FDA selects who represents the patient.

Transparency in the representation process.

Who do we call patients?

Patient Market Power

"I Represent Thousands"

Standardized protocol for Hand Sanitation to combat HAI.

Can we get traction to use Clorox wipes in hospital with private sector partnership.

Let's create 3-5 principles for Patient Engagement

- Petition online

"Don't bring flowers - bring Wipes"

"Stay Well Card with disinfectant/bleach wipes"

One page on the web:

1. Patient/Family - definition

2. Petition Change.org - 100,000 signatures

3. Bullets - Consistent 5 principles

4. Quantify our reach

Basically we want Patient Parity which is achieved via:

(1) Access to Clinical Data 

(2) Cleanliness

(3) Dignity / Respect

(4) Visible / Transparent  Cost and Quality

(5) Accountability

(6) Patient Parity

(7) Outcome-based Payment Model

Patient Parity - with Data, Accountability, 

We want a databank of skills and talent, experience, credentials.

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#Cinderblocks #hckc Empowering the Next Steps

A session led by Kate Knodel

Katherine Cartwright Knodel, speaker and workshop leader, writer, empowerment coach, spiritual director, and transformational training designer, works with groups to help them empower the life and mission of their organizations and with individuals to heal and empower their lives. An ordained Lutheran pastor specializing in transformational ministries, she served congregations for 22 years and continues to preach, teach and consult.  She  is an instructor for Pennsylvania Diakonia, teaching two courses, Biblical Images of the Life of the Church and Communicating the Gospel, a columnist for the Bucks County Courier Times, and maintains a coaching and healing practice in Bucks County, PA. Her forthcoming collection of poetry and short stories, Claws of Uthurunku: Healing the Femininewill be out later this year and she is working on a new book, Opening the Heart of the Church: Empowering People for Compassion and Authentic Community. She has developed and leads a number of workshops, including Anthropology for the Soul: Excavating the Stories of Your Life andEmpowering Church-Empowering Leader, a transformational training design that can be adapted for any spiritual community or organization. She volunteers with the SEPA Chapter of the American Red Cross as a Specialty Volunteer in Spiritual Care.  Her poetry and education page, Awakened Spirit,exploring the landscape of poetry, myth, and the fractured-expanding-healing self, can be found on Facebook. She is certified in Transformational Training Design and Empowerment Facilitation through The Empowerment Institute Training Programs.

We are tipped on the edge of something.. A Tipping Point

Amazing Empowered People working separately.

We need a common mission.

We need to work out the big picture and see how people fit in to the puzzle. Let people find their niche.

Kait Roe: We need to hold hands and jump together.

We need to move with intent.

HealthCare is operating on the wrong paradigms. We need to call that out.

Speak up - Take the energy and passion and put it in to action.

But.... (This is a limiting belief that gets in the way of what we want to do.) Acknowledge and Turn it around.

Energy goes where energy flows. Thoughts become things. What we think is what we become.

Assets:

- Amazing Stories

- Community

- Passion

- Skills

- Knowledge

1. Awareness - Where are we now?

2. Vision - Where do we want to be?

3. Transformation - Limiting belief and Turn it around?

4. Growing Edge - Riding the wave.

Mavens, Connectors and Sales People.

Karen - CMS Connector - PWP + PFP

Kait - LGBT Disparity 

Joe - IT Help understand/empower (standards) Connect PWP Patients . S&I automate BlueButton - Writing the standard

Mark - Voice of the Patient in an Enterprise that is focused on Medical Coding. Set the 2013 HealthCamp Schedule. Setup HealthCa.mp/Austin. Enable local organizers to run HealthCamps.

Robin - Bring the voice of the Policy Wonk - The Analytical Eye. Blog to prevent important issues being dumped. "It is easier to resuscitate a living patient. Act as a sales person for the movement.

Josh - Connector. Learn lessons from Patients. Build a team that will work on empowering patients based on real world information.  Delegate to balance workload. Kait Roe to advise and Jerri to oversee.

Erin - MedicineX / Health 2.0 / Codio - talking about Patient Empowerment. Breaking our boundaries. Connector and Sales. Slideshow for events.

connecting patients to solutions.

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#cinderblocks and #hckc kicks off w/@hitshrink as fire starter

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

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#Cinderblock Igniting the evening in a Partnership with Patients

Some of the themes rom the Ignite sessions:

Josh Rubin - Building a Learning Health System

Sharing saves lives!

Share your health data - it may save your life!

The Tyrants always fall... The power of the people together is an unstoppable force.

Let's all work together to give the gift of 'Health to our nation and our children.

Ann Becker - Holding hope at the intersection of Physical and Mental Health

Mental Health is still the re-headed step child of health.

We talk about our brains and our bodies as if they are separate parts.  You can't disconnect this stuff.

Bart Lindtrom - To Die in Peace - New Terms of Engagement

A fascinating matrix of the terms of our death.

Susan Hull - Ignite our collective voices

We all wear many hats but at heart we are healers of humanity.

Trying to get nurses to ask for THEIR e-health record.

Asking for health to give Nurses a voice.

Health is Social - echoes my quote: "Health MAY be private, exercise often solitary but Health and Wellness is SOCIAL"

Michael Weiss - Using the Health Care Social Media for Patient Empowerment

An era of technology powered Health Care Social Media for Patient Empowerment.

Talking about Crohn's Disease.

Use Health Care Social Media for: 

1. Reference Tools.

eg. Wikipedia - Starting broad but get pointers.

2. Find the non-profit foundation that represents your disease.

3. Go to a Web Portal - eg. WebMD or Mayo Clinic

4. Then go to Yahoo or Google Groups on your disease.

5. Then setup alerts on Google for the terms that are popular.

6. Subscribe to Blogs

7. Subscribe to Video Blogs

8. Check out Facebook.

9. Then use Tweetdeck to filter the Twitter stream. Use Hashtags.

10. Check out the Tweetchats - such as #HCSM on Sunday evenings.

11. Check out Google Plus, Hangouts and LinkedIn Groups.

12. Tumblr - Free Association sites. 

13. MHealth using your phone as a medical device.

The patient becomes more empowered and more effective.

Steve Daviss - What's your number

WhatsMyM3.com - a company that has designed a multi-dimensional mental health app.

There was no tool that measured the top three mental health illnesses. 

Depression is the #1 cause of disease burden in the world.

Patients with Mental health illnesses generally cost twice as much to treat with a given medical condition.

e.g. Patients are too depressed to deal with their condition.

If you have a medical condition, substance abuse and mental health issues you are 15 times more likely to be hospitalized.

After being featured on NBC the WhatsMyM3 app was the top rated health app on iTunes for 3 days.

Carolyn Capern - Social Media Matters

The Late Fred Holliday was Carolyn's tutor at American University.

Social - It's about being Social and being available, being friendly. About building relationships.

Humans can't create matter - only value.

Humans value emotional connection.

Patients use the social web to address the question: What is happening to me and what can I do about it.

Listen to Me - Talk to Me. Meet Me where I am.

Amanda Greene - The Journey to discovering LA Lupus Lady

Control the Flares. Find the Flair and own the LA Lupus Lady.

Become a Patient Advocate - find your voice. Tell your story.

Passion is contagious and Lupus is not!

Erin Gilmar - Breaking Boundaries.

Oh to live on the moon!

Started Health 2.0 Austin.

How do we change what we see in ourselves?

Casey Quinlan - How asking what things cost can shift the system

The big elephant in the room.... We are encouraged to ask questions except the biggest one...

HOW MUCH IS THAT?

Health Care is the only consumer-facing industry with NO PRICE TRANSPARENCY

Let's change that by asking....

HOW MUCH IS THAT?

$2.3T per year. Yet we don't know what we spend.

When we ask what things cost we can make decisions about the cost and quality trade off.

Jari Holland Buck - Hospital Acquired Infections

We all want to see the Get Well Soon banner as we arrive home.

We need to be proactive to avoid Hospital Acquired Infection.

To protect patients doctors need to use:

- soap and water

- alcohol cleanser

- Nitro gloves.

These three things are the most effective things you can do to fight infection.

Pat Mastors - The Patient Pod

Hospital Acquired Infections account for 100,000 deaths each year.

The Patient's world is:

Stripped of power and identity, dependent on others.

The Patient Pod is something that the Patient has as their own by their bed.

Hand Hygeine, notes, clips, paper, pen. picture holder.

It gives independence. 

Check out the Patient Pod on MedStartr.com. Back it here: http://www.medstartr.com/projects/46-saving-100-lives-with-the-patient-pod

$19.99 and it could save a life.

http://thepatientpod.com/#

Lisa Fields -  Twitter.

@Marksphone - Mark Dimor - Humans are little tiny hope machines.

Eunita Winkey - No More Clipboards

The behind the scenes struggle for Medical Records.

We have to teach society to share information about Electronic Medical Records.

EMR's save lives.

We need to make EMRs as available as credit records. 

Evelyn McKnight - Hepatitis Outbreaks Nationals Organization for Reform

Telling the tale of the largest outbreak of Hepatitis -C in American History. She was one of the 99. A nurse reused a syringe. It should never have happened.

In the past 11 years there have been 620 patients infected in 52 incidents.

Evelyn started a foundation to make every use of a syringe a safe one.

www.ONEandONLYcampaign.org

Joleen Chambers - Give a DAM about Implants

Talking about Failed implants - Check out the Failed Implant Device Alliance.

When you r implant fails you are given the run around. 

A large proportion of Implanted devices are not tested. They are grand-fathered in as being "similar" to an existing device.

In 2010 30,000 serious events with medical devices were reported to the FDA.

Patients get invited as stakeholders but they don't have a vote even though they are the only party with real skin in the game.

http://FIDA-ADVOCATE.BLOGSPOT.COM

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#Cinderblocks HIT Policy and the patient

Health Care happens with me, not to me.

Nothing about me, without me.

A session by Jim Hansen

3:00-3:45 HIT Panel

Jim Hansen : 

"Consumer/Patient Experience in a Transformed
 HIT-Enabled Health and Health Care System 

Jim Hansen serves as Vice President and Executive Director of the Dossia Consortium, a not-for-profit association that brings together major employers - including AT&T, Intel & Walmart - representing over five million employees, dependents and retirees to advance the use health information technology to improve the safety, quality and efficiency of health and health care for all consumers and patients.

Mr. Hansen possesses 30 years of information technology, strategic planning, product development, marketing, operations and finance experience including 20 years within the health care industry.  His journey in consumer/patient engagement began as a member of the Health Partners (Minnesota) team that created the innovative Consumer Choice System in 1994.  Prior to joining the Dossia Consortium, he was founding President and CEO of CareEntrust, an award-winning not-for-profit employer-sponsored health information exchange (HIE) delivering secure regional health record services for use by both consumer/patients and health care providers.

Mr. Hansen is actively involved with a consumer/patient perspective in a number of national health and health care transformation supporting organizations including the Institute of Medicine (multiple groups), ONC S&I Framework Transitions of Care workgroup, and most recently DirectTrust (a group developing a trust framework for Direct).  He was previously a long time working member of the Healthcare Information Technology Standards Panel’s (HITSP) consumer workgroup.

"There is a business model for Health Information Exchange (HIE)  - It's the Patient!"

Bipartisan Policy Center is the only sane resource for information in the toxic area that is Washington DC.

Veterinarians treat our pets better than we are treated by the health care system.

it is interesting 

livli.com - beta version of customer-facing PHR based on Dossia.

https://player.vimeo.com/video/41780722?byline=0

Next up: PocketHealth

Where can you put your Dam Data.

Options: 

1. Paper copies in a file

2. Patient Portal

3. Personal Health Record

EHR v PHR - the difference?

EHR is a business record that a provider uses to deliver care

PHR is used by a person to manage their health information.

A Patient Portal is a feature of an EHR. A window on to your data in their EHR.

Most provide more features - such as secure communications with providers, appointment requests, refill requests and access to educational material.

If your doctor moves health system. You can follow him, but your data will not.

A Tethered PHR is linked to an employer or insurance company.. It doesn't go with you when you change employers or insurance.

An Independent PHR, like Microsoft HealthVault, the deceased Google Health, NoMoreClipboard.com. Less likely to have administrative functions for interacting with providers or insurers. eg. Appointment bookings, refill requests etc.

PocketHealth is a mobile PHR. The data sits on your Smartphone.

What does Stage 2 Meaningful Use mean for patients?

- Eligible Providers must provide patients with ability to view, download and transmit their health information within 4 days of being available.

- Eligible Hospitals must provide the same about a hospital admission within 36 hours of discharge.

These are game changing rules for PHRs because these rules include allowing data to be downloaded  to a PHR.

Our Health System is insane. We don't even record what works.

Josh C. Rubin, JD, MBA, MPH, MPP, is the the Executive Director of the Joseph H. Kanter Family Foundation and Health Legacy Partnership (KFF). Josh brings to KFF not only energy and experience, but an evidenced strong commitment to KFF's mission. In 2009, KFF contracted with Josh's then-employer eHealth Initiative (eHI – a multi-stakeholder Washington-DC based nonprofit organization whose mission is to drive improvements in healthcare quality, safety, and efficiency through information and information technology) to have Josh conduct global research on international uses of electronic health records (EHRs) for outcomes research purposes; research that served as the foundation upon which KFF's international working meeting was developed, in collaboration with The Commonwealth Fund. As Josh learned more about KFF's vision for a Learning Health System (LHS), he not only articulated his belief in KFF's mission, but volunteered hundreds of hours of his time and expertise over to serve as an advisor, to build partnerships and seek out new opportunities for KFF, to conduct research, and to refine and advance KFF’s mission -- before ultimately becoming KFF's Executive Director. Embracing Nelson Mandela's notion that "Many things seem impossible until they are done," Josh is exceptionally committed to doing whatever it takes to surmount any obstacles along the path to effectuating KFF's vision for a national-scale LHS that will advance medical research and patient safety, transform the practice of medicine, and empower clinicians and patients.

We must learn from our health experiences. 

Health IT is about unlocking the potential for people to help themselves.

We should be able to make decisions based upon data that encapsulates the experiences of people like us.

A Learning Health System - A foundation of the Federal Health IT System.

Meaningful Use is a status achieved by an individual. 

A Learning Health System is a system that enables MU.

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#Cinderblocks Propublica unleashing the power of the crowd to give transparency to health

Olga Pierce (@OlgaPierce) of ProPublica is leading a session and showing how they are using crowdsourcing to discover health issues.

ProPublica is basically an investigative journalism organization. 

They have developed some Patient Safety pages and are crowd sourcing patient stories.

Olga now turns this over to an engaged audience for suggestions on what could be added

Patients want information about Doctors. Particularly about malpractice information.

Steve Daviss raised the question about the accuracy of provider directories. 

Payers have no incentive to clean up the roles. It would shrink the number providers on their lists.

Providers have no incentive to update the Payer directories - unless the checks stop! They also have to update their information with multiple Payer organizations.

@LesaMitchell:

Health Care Costs are killing us in the USA. This is so true in so many ways!

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#Cinderblocks Implantable Device Registries - A thought

I came away from the previous session at the Partnership with Patients Summit where the discussion was around MRI safety and also about issues with Implantable devices.

I came away thinking this:

- We are empowered and engaged Patients
- If we are going to have a procedure that involves implanting a device in our bodies why don't we insist on the information from the manufacturer. such as
-- Manufacturer
-- Device and Model Number
-- Serial Number
-- FDA Approval data
-- Warranty information
-- Life expectancy of the device

I am sure there is other information we should ask for but this would be a start. Then as patients why don't we organize ourselves to post this information to a registry that we create and maintain.

Then spread the word to encourage others to take the same step and record and share this.

Ultimately we could push the hospitals to share this information as part of a BlueButton download.

While we are at it - Why don't we crowd source a Leasehold contract for medical device manufacturers and doctors. What do I mean by this? I mean that if a doctor is going to implant a device he should sign a contract to "Lease" space in our bodies. With that Leasing contract comes certain stipulations that the tenant needs to comply with.

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#Cinderblocks Device and Diagnostics safety discussion

Tobias Gilk (@TobiasGilk) giving a presentaiton on MRI Safety at the Partnership with Patients Summit at Cerner.

As an Architect they figure out what they don't need to know.

MRI may not have the same issues as radiation-based diagnostics but it still has it's own issues.

Radiology regulations are based on the use of ionizing radiation - which doesn't cover MRI.

We believe MRI is safer because there is no regulation around it's use.  This is not true.

MRI accidents are skyrocketing. Since 2000 there has been more than 500% increase in MRI Accidents by 2009 (523%) while usage grew by 90%.

In the second part of this session Joleen Chambers talks about implantable devices telling the story of her brother's failed elbow implant..

The IOM has found that the FDA's 510(K) medical device approval process is flawed.

We are seeing fewer medical devices introduced each year. However fewer devices are being tested.

Q2 2012 saw over 123 Million medical devices recalled. A New High.

Most recalled medical devices (in the last 5 years) had been released through the FDA's 510(k) process.

Organizations, like the Mayo clinic, maintain registries of devices that are implanted. The information is proprietary and not accessible to the patient. 

When we see Product Warranties for Implantable devices.

We also want Product registries that are accessible to patients.

There is no synchronization between implanted device makers and MRI scanner manufacturers. You can't check if it is safe to scan a patient with an implantable device.

Two different parts of the FDA manage these two areas. They don't interact.

Does the FDA even "know how" to regulate these devices? It is an escalating challenge as devices get more complicated. Is an FDA seal of approval giving a false sense of security.

The MRI is fundamentally safe and yields an incredible amount of information in comparison to the risk. The issue is how the tests are conducted.

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#cinderblocks Cerner experience theater

At Cerner world headquarters for the Cerner experience theater.

This place is impressive it is a shame they don't like pictures. Talking about expanding the plan of care beyond the walls of the hospital. In the example they talk about the health team: which includes the patient - Walter, his family and his doctor, nurse , cardiologist etc.

Lets imagine Walter is walking with buddies and doesn't feel too well.

The Tele-health nurse is alerted.

Using FaceTime, iPad connected blood pressure monitor there is an initial evaluation done.

I get to play Walter. Here I get to sit in the recliner "at home"

Walter heads to the clinic. Check in on the iPad. 27% of primary and specialty care physicians own iPad or tablets. 5x higher than in the general population.
- source: mobihealth news

Cerner is a self insured organization and incubated new models of care for their own population. It is fascinating to listen to the patient perspectives when looking at a physician oriented health record.

The average cost of diagnosing an treating arrival fibrillation in the emergency room is approximately $10k per visit.

In the inpatient setting it is fascinating to see the capabilities of the hill-rom smart bed.

Smart room technology is still a new field. Also great to see Cerner's dispensing station. Automated dispensing of the correct medications.

Cerner Mystation provides patient access to the Internet.

Clinical decision support can save hospitals a lot of money. Algorithms to watch for low Braden scores related to pressure sores saved a Chicago hospital $4M in re first year of use.

Heart failure is the #1 hospital readmission. Coordinated care can significantly reduce cost. This is estimated to save $60k for a heart related treatment ad also reduces readmittance costs by $15-18k.

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

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#Cinderblocks ACA has changed provider mindsets

More blog posts from the Partnership with Patients Summit at Cerner in Kansas City, MO.

Providers mind set has changed as a result of the Affordable Care Act and initiatives coming out of the Dept of Health and Human Services (DHHS).

Patient Portals are now front and center. It is helping to drive patient empowerment.

BlueButton is the emerging tool that can help Patients take control of their Health Records.

Login and Download!

Great to listen to Steve Daviss and learn a little about his background and some of the many hats he wears which includes:

The mental health blog - Shrink Rap: http://psychiatrist-blog.blogspot.com

I am looking forward to Steve being our Firestarter at HealthCa.mp/KansasCity tomorrow.

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#hcbos the social dimension of health

Communication is at the heart of effective relationships in health.

Social health:

Accountability.

Multiple sclerosis - seriously annoying whereas medical professionals just dealing with the serious It takes a village to beat a disease.

Providers and payers and other big brands can add value as stewards in the community either directly or indirectly.

Patient communities are pretty bright and will often moderate themselves more effectively.

80% of patient bloggers blog under their own name. Most are on public platforms such as Wordpress or blogger.

Diagnosis and living with a condition are two totally different worlds.

The patient narrative brings meaning out of chaos for other patients. Pharma hasn't learned to be stealth enough to last long in online communities.

Brands need to be brutally honest about their motives for engagement and then show that they are listening.

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Partial recap of #hcbos discussion on shared decision making

A partial recap...

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#hcbos toya and Danny lead a session

This session is talking about how patients are engaged in setting health goals.

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

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#hcbos @moorcycle_guy leading #abbi #bluebutton discussion

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

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#HealthIT4U Great conversations at HealthCa.mp/HHS

HealthCa.mp/HHS goes to show that it is not the size of the crowd it is the richness of the conversations that matter.

A small group of people congregated for a wide ranging discussion that focused on what actions we could take to improve Health Care through Health IT.

While Health IT has been receiving significant investment in recent years, public health and welfare services are still starved of funding. Consequently there is a need to maximize the use of resources. What does this mean? We need to aggressively share information between organizations in this space. By sharing data in a way that is reusable we will find people that can make sense of the larger pool of data.
Another line of discussion was to look at where there were "pain points" that could help to drive change. This evolved around a discussion about sources of funding. We are very used to looking at hospital systems as a source of funding because they will benefit from the savings from a population with better health. But is this really true. In the current environment hospitals are rewarded for handling bigger patient volumes. if they see fewer patients they make less money. It is only as payment models change that are based on outcomes will we see the focus shift to preventative care. One of the points I made is that the current system places no value on the time or quality of life of the patient. Indeed the simple word "Patient" implies a passive player that waits for others to take action. We need to recognize the role of each and everyone of us as a "Health Citizen." Citizenship should not be a passive role. We all have a duty and responsibility as citizens.

If we place a value on our time as Health Citizens then new workflows become interesting. Would you rather pay for an online video consultation in your own time rather than battle traffic and take time off work to visit the doctor?
One question asked was whether we could use the stories of the olympians to encourage people to get engaged in their health? Would too many people think that these almost super-human athletes were too far removed from everyday life? It would be great for some of those athletes to tell the story of the value they get from being able to download and check their health records and to carry them with them when they travel.

A discussion also took place about caregivers and the dispersed family. Many families today are separated by distances and this makes it incredibly hard to care for family members. Health Care needs to recognize the family unit's role in health care and enable data sharing.

We also need to recognize the role of the individual as the de facto Health Information Exchange. It is no longer a case of enabling Health Citizens to download their data. We also have to change the culture that treats any data from the "patient" as second class data. To do this we have to think about what tools providers will need in order to cope with receiving ever growing volumes of patient managed and patient generated data.
A really interesting discussion developed about the potential to use Children's vaccination records as an agent of change. This is an area of annual frustration for many families. Compiling the latest vaccination information in order to supply a child's school can be an exercise in frustration that involves a visit to their child's doctor. Imagine a situation, like in Indiana, where parents could go on line to obtain their child's vaccination record. To identify missing vaccinations and being able to forward the completed vaccination record to the school. This is an opportunity to include the parents, schools and the children in a coordinated move to improve health.

Another aspect of the discussion was a re-affirmation of the work I have been doing with Community Education Group. One of the other participants - from the National Health IT collaborative for the Underserved - pointed out how the role of the Health Citizen Navigator can play an incredibly valuable role in the community to spread the Health message and engage people in the community in their health. At the present time these Community groups are kept at arms length. We need to embrace them and find a way to see that their efforts can be rewarded. Community-based medical homes have so much potential to improve population health.

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#healthit4u seeding some ideas for a rapid fire healthca.mp/HHS

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

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I may get deported for desecrating the walls of #hhs great hall for healthca.mp/HHS #healthit4u

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

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#HealthIT4U @Farzad_ONC kicks off National Health IT week and the Consumer Health IT Summit

"We don't have to put the Patient at the Center - The Patient IS the center of health." - Farzad Mostashari

Today the Consumer Health IT Summit - 2012 kicks off at the Hubert Humphrey Building in Washington DC.

HealthCa.mp is taking part by running one of the tracks in the afternoon work sessions.

Peter Levin is here to talk about the BlueButton Initiative

"People like Todd Park, Farzad and Aneesh Chopra provide Air Cover that lets you take risks in Government"

BlueButton came from a "Why Not?" question.

In Memoriam - Jim Speros - Blue Button is here because of the work he did.

The idea of BlueButton was conceived in New York in January 2010 at a Markle Foundation meeting where Public and private sector folks could engage in dialog.

The ONC is running with BlueButton to turn it in to a National Initiative. 

The VA Expected may be 25,000 people would be interested in BlueButton. The VA reached that in 3 months. That number, less than 2 years later is over 1 Million.

Remember: By Law patients have the right to their medical records, when available. The challenge is making sure those records are available.

Randy Watson - A Veteran and proponent of the BlueButton - is a Facebook junkie and friended the VA page on Facebook. Little did he know that Peter Levin was one of the moderators of that page.

Peter Levin recruited Randy to try the BlueButton. Randy used to have to go a VA hospital and pay to get copies of his records. Randy is dealing with multiple chronic conditions. His file with the VA is over 600 pages just for his heart disease. Now he can access all of his data in seconds. 

Patients NEED TO ASK FOR THEIR RECORDS! 

Randy "I have a right to my records. I have the iPhone App that lets me access those records from anywhere. You have to look after yourself."

Next up: Farzad Mostashari and Lygeia Ricciardi

Lygeia: "We are not the Government leading the way. We are the Government as Catalyst. It is a partnership of the public and private sector."

Last year there were 30 pledging organizations and this is now over 400.

Two types: Data Holders and Non-Data Holders:  http://www.healthit.gov/pledge/

The three A's of Consumer engagement:

1. Access

Meaningful use is meant to drive access. 66% of hospitals met the measure to give people access to their medical records - But no patients asked.

In meaningful use stage 2 there is more accountability in driving hospitals and doctors to encourage use. Stage 2 will measure that at least 5% of their patients use the tools to gain access.

2/3rds of patients would consider changing doctors in order to gain access.

We therefore have a disconnect.

2. Action

Look at your records, Check for errors, share it with others. 

The other side of action is engaging the developer community.

Many developers in health care are engaged because of a personal story. Watch out for BlueButton Developer Challenges.

3. Attitudes

Do you feel uncomfortable asking for your health information.

Farzad - The chart was the only place where all the information came together. Each doctor only has one piece of the puzzle. The Chart has it all.

Our data is for us and about us.

Video Challenges have been created to encourage people to ask.

Alex Drane of Eliza: Created a video to educate people about accessing and sharing our health information.

Ask your Health Provider how they use HealthIT.

Check out the video: HealthIT.gov/4Uvideo

The ONC is looking for input on the Three A's strategy.

BlueButton - What's Next?

Farzad and Peter Levin are back talking about the next phase of BlueButton.

We don't just want to do BlueButton inside the Government. We need to do it outside the Government.

We want Health Citizens to ask for their health data.

The objective is to grow from 1 Million users to 100's of millions.

Turning the BlueButton from a noun to a verb!

We have to make the BlueButton more usable. It needs to be both Human and Machine Readable.

Meaningful Use includes the concept of allowing consumers to transmit their health information to a third party. This moves us to a concept of a personally controlled health record.

There are already 100M americans with electronic health records. We need to unlock those records for the patients.

#VDTNow https://twitter.com/#!/search/?q=%23VDTNow&src=typd

Cerner, NoMoreClipboard publicly declared support for BlueButton View Download Transmit by early 2013.

The three BlueButton Initiative Presidential Innovation Fellows are here at the summit. These three are driving the promotion of BlueButton turning it from a noun to a verb.

Todd Park - Driving openness and the power of data.

Why is BlueButton one of these major initiatives? Because patients are the most underused resource in Health Care.

Getting access to your own data isn't an abstract thing. It can be the difference between life and death. 

BlueButton absolutely transforms the life of Americans.

Access to data is driving transformation across many industries.

Patient Engagement is the blockbuster drug of the Century.- Leonard Kish

Access to our Health Data is enshrined in the HIPAA law of 1996. 

Cignet Health in Prince George's County just got fined $4.3M for not allowing patient access to their Health Data.

There is a wide perception that HIPAA is a barrier to patients accessing their data. HIPAA is about using health data for the benefit of the patient and only the patient.

BlueButton at Center For Medicare and Medicaid Services: BlueButton is giving people the raw materials to manage their own health.

The Automated BlueButton Initiative is moving this to allow automated push and pull of BlueButton data. CMS has been an early adopter of BlueButton. CMS now provides access to 3 years of Part A/B data.

CDC is excited that the rest of the world is catching up to providing data. We are facing a 50 year high of Whooping Cough. Adults need a booster but only 8% of adults have.  Wouldn't it be nice to be go online and check!

Indiana has implemented MyVax to allow residents to get information on their vaccinations. Next week in Minnesota abnother 9 states are looking to learn from what Indiana has done. 

MyVaxIndiana

NIH Cancer Institute: 575,000 people will die of cancer this year. About half of those deaths are unnecessary.

84% of patients think their docs are using electronic medical records. 

Docs sharing information electronically. 92% of patients said this was very important

90% of patients thought the ability to download their health data was very important.

Todd Park: The main action with BlueButton is happening in the private sector.

Lygeia Ricciardi is now introducing a panel of private sector organizations that are working with BlueButton.

• Bill Feller, Vice President of Innovations, UnitedHealth
• Clay Patterson, Vice President and General Manager, Cerner
• Becky Sykes, Chief Information Officer, Catholic Health Partners
• Susie Hull, Consumer e-Health Engagement Task Force, Alliance for Nursing Informatics
• Alan Blaustein, Founder, CarePlanners
• Loyce Pace-Bass, Director of Policy, LIVESTRONG 

When Patients are engaged they are healthier. Over half of consumer outcomes are driven by their decisions.

UnitedHealth have given 17M members access to their health records via BlueButton. On track to reach 26M users of their 77M members.

Clay Patterson - "You can't change healthcare if the patient is a passive participant." 

In the Patient Engagement business at Cerner:  Implementing View Download and Transmit BlueButton ASAP. Bluebutton download is happening in their next release. Cerner are also hosting the Partnership with Patients Summit  on Sept 21-23 and HealthCa.mp/KansasCity is a part of that.

Catholic Health Partners is deploying consumer portals. Catholic has gone from not wanting to give access to encouraging it. They have even adapted their patient workflow to sign up the patient as part of their first visit.

ANI: Represents 3.2M nurses. Part of an Alliance to bring a unified voice for nurses. Nurses are in a unique position with their relationship with patients. This week 3.2M nurses are being asked to stand up and ask for their medical records.

CarePlanners: Kudos to the HHS team and Todd Park - for their collaborative spirit which is transformative. If more people were like this we would be a much better society. Alan Blaustein had a rare cancer (only 500/year). Found himself at the intersection of competitive interests in health care. 

Access is not the only issue. The next phase is navigation, organization and coordination of care.  Want to help people better curate their health information.

Helping people to Avert a health crisis.

"There are legions of entrepreneurs ready and waiting to attach these challenges. We have the technology available. We need to make the information available."

Livestrong: It is all about the patient. 2010 survey:  Patients want their data, take it with them, share it.

They want to USE their data. They want to feed it in to applications so they can ACT on it.

In the area of survivorship: IOM - Lost in Transition survey. Very little information about the path after a cure. 

Livestrong is syncing their care plan with various cancer registries so that information can be imported and acted upon.

What can Providers do to help Patients use Health IT.

Catholic Partners are piloting video discharge instructions. 

Clinicians can invite their patients in to a conversation. What is their data telling them. How do they coordinate care across providers.

Care Plans have been the domain of the provider/nurse for an episodic visit. THere is work to evolve a longitudinal care plan.

We need to write care goals in the patient's language rather than the provider's language.

What advise would you give to others to get involved:

Keep it simple. People don't understand the acronyms. Think in terms of stories.

Ease of access. Easy to understand. Use terms consumers understand.

Not a one time message. Keep reinforcing.

Don't make a token effort. Not a tick box commitment. Be engaged.

Provider should try using the tools they are giving to their consumers.

Entrepreneurs need to understand what they are building. Understand the problem they are solving.

We need educated consumers. Don't dumb down the information to meet the consumer. Help them understand so they can take care of themselves.

There is a Medicaid pilot in Michigan for BlueButton.

Closing Remarks, featuring Dr. Bill Moreau, Managing Director of Sports Medicine, United States Olympic Committee and Farzad Mostashari, National Coordinator for Health IT, HHS 

Health isn't just about sickness. It is about being able to lead a healthy life.

The USOC has one of the most transient populations. 

Their health IT platform was archaic back in 2009. The average olympian has 8 clinicians dealing with their care.

The new Health IT system went live in time for the London Olympics. 

The Lesson - If you want to get it done you can - if you put the effort in to the implementation.

The Athletes were able to fill in their own health record. Every clinician had access to all of the information - at any time.

The Athletes can download their data. They can create a jump drive with their data which they can carry with them.

Farzad gives a reference to @QuantifiedSelf.

The new Health IT system gives the US Olympic Committee the ability to help their athletes better understand their performance.

Farzad: "Patients' Access to their data is not just a right. It is the right thing to do"

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