Here is the TweetReach Report for Partnership WITH Patients and HealthCampKansasCity #Cinderblocks #HCKC – ekivemark: pre-blogspot

Here is the Tweetreach report from this weekends Partnership with Patients Summit and at Cerner in KansasCity, MO.902 Tweets,129 Contributors, 132,864 Accounts Reached, 1,842,782 impressionadownload

via Here is the TweetReach Report for Partnership WITH Patients and HealthCampKansasCity #Cinderblocks #HCKC – ekivemark: pre-blogspot.



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

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



#Cinderblock Igniting the evening in a Partnership with Patients | Health, Vitality and Technology

#Cinderblock Igniting the evening in a Partnership with Patients | Health, Vitality and Technology.

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 – 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…


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

Let’s change that by asking….

$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 Back it here:

$19.99 and it could save a life.

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.

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.





#Cinderblocks Propublica unleashing the power of the crowd to give transparency to health | Health, Vitality and Technology

#Cinderblocks Propublica unleashing the power of the crowd to give transparency to health | Health, Vitality and Technology.

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.

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



#Cinderblocks HIT Policy and the patient | Health, Vitality and Technology

#Cinderblocks HIT Policy and the patient | Health, Vitality and Technology.

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 – beta version of customer-facing PHR based on Dossia.

Next up: PocketHealth

Where can you put your Dam Data.

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, 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.



#cinderblock @PracticalWisdom aka Lisa Fields Asks “Who should you follow on Twitter?” + making PPT snap crackle and pop | Health, Vitality and Technology

#cinderblock @PracticalWisdom aka Lisa Fields Asks “Who should you follow on Twitter?” + making PPT snap crackle and pop | Health, Vitality and Technology.

Twitter is:

…like a walkie-Talkie
…a research tool
… a lasso that only captures what you want
…Something that makes the world smaller

Now for the real subject… How to make PowerPoint, Tweets Speaking and TweetChats Snap, Crackle and Pop.

PowerPoint is just one tool when making a presentation.

Lisa and I share a passion – We both hate bullet points in PowerPoint

Check out @bonnycastle for great powerpoints

Pinterest is powerful visuals… eg.

From my post “is Oauth sinking?

CPA – Continuous Partial Attention @LindaStone

Lisa Fields: “You are the cake and your slides are the frosting.”

Check out Garr Reynolds – @PresentationZen

Check out Made to Stick: Why Some Ideas Survive and Others Die

– Keep it simple.
– Concreteness
– Credibility

Facts weaved with a story – @susannahfox is an excellent exponent of this.

Stories make the message sticky.



#Cinderblocks Implantable Device Registries – A thought…

Thoughts by @ekivemark( #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.



#Cinderblocks Device and Diagnostics safety discussion

Thoughts by @ekivemark( #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.


#cinderblocks Cerner experience theater

Thoughts by @ekivemark( #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.



#Cinderblocks ACA has changed provider mindsets

Thoughts by @ekivemark( #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:



I am looking forward to Steve being our Firestarter at tomorrow.