The Partnership with Patients Agenda

The Partnership With Patients Summit:

The first patient summit in Kansas City supported by crowd-funding, designed using social media with art by Regina Holliday

Patients, Providers and Health Professional from all over the United States will convene in Kansas City, Missouri, from September 21through September 23 to present speeches on Health Information Technology, Patient Safety and Quality and Media and the Message of Patient Advocacy. 

For too long patient input has been an afterthought in health policy.

We are changing that.

This summit focuses on education, networking and partnership—of patients, providers, vendors and explains the relationship between government policy and patient advocacy.  Conference attendee’s will suggest ways to promote patient participation, learn about the effect of change and growth in the tech sector on patient advocacy, and use social media to further the voice of the patient in national health policy.

What makes this a must attend event?

The Partnership with Patients Summit is organized completely using the free tools of social media and by a loose confederation of advocates, providers and vendors volunteering their time.

The registration page is on eventbrite: http://partnershipwithpatients.eventbrite.com/

Partnership With Patients partially crowd-funded by both Medstartr and Health Tech Hatch 

The non-profit partner is the Society for Participatory Medicine who is helping fund patient travel scholarships, http://participatorymedicine.org/about/donations/

Internationally recognized patient speakers such as Dave DeBronkart, Trisha Torrey and ReginaHolliday will be presenting.

The conference hashtag is #cinderblocks on twitter

The Facebook group is https://www.facebook.com/groups/295223483902051/?bookmark_t=group     

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Thank you to our Sponsors!

Event promotion, Patient Travel Funding and Sponsoring Lunch Saturday
















       

Thank you all of our other sponsors 


Friday 21, The Walking Gallery: 6:00pm to 8:00pm

To begin this conference The WalkingGallery gathers on Friday night Sept 21, Kansas City Marriott Downtown 200 West 12th Street, Kansas City, MO 64105 light refreshments will be served

Twitter hashtag: #TheWalkingGallery

The patient voice — in the form of the Walking Gallery of Healthcare art event —will arrive in Kansas City as walkers from throughout the nation will display the stories painted on their backs of business jackets. Internationally recognized patient rights art advocate Regina Holliday will debut her latest works. 

  

"It will be exciting to see so many new members of the Walking Gallery gather for this event. At this point, we have 160 walkers around world representing the patient view within medicine. I am proud to be a member of the Walking Gallery," said Holliday, the Washington, D.C.-based patient rights arts advocate.

Saturday 22, Registration begins at 7:30am

Cerner will host the Summit Saturday and Sunday at their educational facility at Cerner Educational Building 6711 NE Birmingham Rd  Kansas City, MO 64117

Coffee and breakfast will be served in the exhibition area 

Saturday Morning 8:00 am in room A  (this room we will record.)

Panel presentation by Society for Participatory medicine 8:30-9:10 

A series of 4x4 presentations from sponsors 9:15-9:45

Explain dividing into three tracks

HIT and Policy

Session 1

10:00-11:45 am first group of 25 patients go on shuttles to experience theatre on Cerner Campus

Session 2

12:00-1:45 pm second group of 25 patients go on shuttles to experience theatre on Cerner Campus

Patient Quality and Safety Room A

Session 1

10:00-10:45: Pat Mastors and Partnership with/for Patients

Session 2

11:00-11:45: Patient Speakers and SpeakerLink Panel: Trisha Torrey, Dave DeBronkart, Tiffany Peterson, Kait B Roe

Media and the Message Room B

(Social Media/Activism/Public Speaking)

Session 1 Bunny Ellerin  on media

10:00-10:45

Session 2 Social Media speaker TBA

11:00-11:45

Lunch

11:45-12:15

HIT and Policy Room C

Session 3

2:00-2:45 Roy Foster: HIT and Meaningful Use 101

Session 4

3:00-3:45 HIT Pannel: What does tech have to do with it? Rosh Rubin, Joe Ketcherside and Jim Hansen

Patient Quality and Safety Room A

Session 3

12:30- 1:45 Device Safety Panel: Tobia Gilk on MRI, Joleen Chambers on Implantable Devices

Session 4

2:00-2:45 Ann Becker-Schutte, PhD and Bart Windrum on Hospice and End of Life

Session 5

3:00-3:45 Jari Holland Buck on Patient Safety

Media and the Message Room B

Session 3

12:30 -1:45 W. Ryan Neuhofel, DO, MPH: Doctors and Social Media

Session 4

2:00-2:45 Lisa Fields: Rocking the Power Point

Session 5

3:00-3:45  Michael Millenson on new media meets traditional media

Closing Remarks in Room A

4:00-5:00

Dinner Served 5:15-6:15

Ignite-style speeches, (20 slides 5 minutes) begin 6:30-8:00

Shuttle back to Marriott 8:15

  

Sunday Registration begins at 7:30 am Breakfast in exhibition space

HealthCamp, an unconference will be held on Sept 23rd in Kansas City as part of the Partnership with Patients summit. Mark your calendars for the weekend of September 21st -23rd. HealthCamp will cap off an exciting weekend at Cerner’s educational facility in Kansas City. Continuing the innovation learning approach from the previous days, patients, physicians, nurses, technologists, health system and policy leaders, payers and suppliers will create session topics the day of the event focused on "Empowering Patient Engagement." The unconference process and the Center for Total Health itself will create a flexible and energetic collaborative environment for participants. Check out the HealthCamp Foundation home page for other HealthCamp information. 

Greeting: 8:00 in room A

Break into unconference sessions 9:00 am/patient speaker boot-camp

Session rooms B,C,D,E,F,

Patient Speaker Boot camp stays in room A to record speeches

9:00 am to 12:00

Grid times for Unconference

9:00am -9:45

10:00-10:45

11:00- 11:45

12:00- 12:45 Lunch and good byes to early departures Exhibition space

1:00pm - 1:45

2:00-2:45 Wrap up in Room A

The conference hashtag is #cinderblocks on twitter

The Facebook group is https://www.facebook.com/groups/295223483902051/?bookmark_t=group       

For more information about the summit and to receive media access with press credentials, contact @ReginaHolliday on twitter or 202-441-9664

About Partnership With Patients

http://partnershipwithpatients.com/home/

This conference is two-fold in its mission. We will be working on strategies for a grass roots support the Partnership for Patients campaign. We will also help enable patients by providing a place to network, learn and grow as patient advocates that focus on health policy. You can read more about this on our website 

Invasion of the C.Diff

I often do things that frustrate my children.  Whether is singing loudly off-key or ruffling their hair in front of their friends, my response to their complaint is always the same.  “When I stop doing this you will know the pod people got me.”  I say this even though the children have no clue what the pod people are.  I say this even though in my deepest heart the pod people scare me.

Of all the films I saw as a child, two frightened me the most.  I am not talking about the surprised jump scare that is staple of the slasher movie.  I am talking about the kind of intellectual scare that keeps you up at night. The kind of scare that makes you plot and plan what you would do if you found yourself stuck within this horrific story.

“Invaders from Mars” released in 1953 was a film you would not want to be stuck in.  The story followed a young boy who sees an object crash from the sky.  His father goes to investigate and comes back different.  He no longer acts like his father.  The boy sees more and more of the townsfolk change.  It is terrifying; no one is admitting that people are being replaced with doppelgangers.

The next horror epic etched within my mind was “Invasion ofthe Body Snatchers” 1956 and 1978.  In this tale people insist that imposters have replace their loved ones but the main character does not want to believe them at first.  He then finds out that giant plant pods contain alien replicas of earthlings.  These pod people replace and destroy their human counterparts.

Both films depict the body human being invaded and destroyed, first as an individual then as a species.  Which brings me to Pat Mastors and her jacket “Invasion of the C. Diff.”

Pat is an amazing advocate and speaker.  She is a photogenic beauty who was a television reporter before entering the world of advocacy.  In 2007, her whole world changed due to the invasion of a spore.

Have you heard of C. Difficile?   For the average Joe-citizen the answer is no.  Many people have heard of super-bugs and perhaps MRSA, but c. diff is often left out the media limelight.  I learned about it a few years ago when I was designing a painting.  I was talking to environmental specialist who works in a hospital.  He told me of all the nasty infection agents, he was most afraid of c.diff in the spore stage.  It was so hard to kill and most of his cleaning agents would not destroy the shell of this invader.

In about 3% of healthy adults and 70% of healthy infants c.diff is a naturally occurring bacteria in the intestines.  Its growth is kept in check by other bacteria.  When patients take an antibiotic, the bacteria balance is upset and many of the residing bacteria die.  If a patient ingests c.diff spores while they lack the necessary competing bacteria the c.diif bacteria will experience explosive growth.  The patient will experience flu-like symptoms and diarrhea.  The infection can grow to the point that patient is in anguish and is estimated to result in death in 25% of the elderly frail who contract the infection.

Pat Mastors knows all of this because in 2007 her father fell.  He got up in the night and fell down the stairs.  He was injured in the fall and needed surgery performed on his neck.  He acquired c. diff and died six months later. 

Pat was outraged.  No one seemed to know about c.diff and it was so very dangerous.  She began to blog about it.  She lay awake at night and pondered what could she do to protect people.  She created a plastic sleeve to cover TV remotes in hospitals.  The surface of the TV remote is one of the leading culprits in infection.  She tried to talk with hospital staff about needed safeguards to prevent hospital-acquired infections.

But like the plot of a scary science fiction movie people were not listening.  They ignored this danger from within and the idea that people were being colonized.  Pat was alone in her knowledge.  So within Pat’s painting, I place her staring in worry at a nameless woman in her pod.  Pat knows what will happen when spores descend.

Not long ago Pat showed me the Patient Pod she created.  She has learned the lesson of her enemy and knows the strength of an impervious shell.  She created a plastic sleeve that mounts on a hospital bedrail with a special clip.  Here you can put your personal things. A photo of you and your family, your cell phone and some plastic sleeves for your remote.  You can keep your things safe and clean.  You can wash the pod off with a bleach solution that kills spores.

There are only two ways to fight c. diff: keep surfaces clean and limit overuse of antibiotics.  Pat is doing all she can as a patient advocate to save lives by providing clean surfaces.  Pat listed herproject on Medstarter.  I urge you to fund it.  She is saving lives and spreading awareness.  I will support her in her mission and if I ever stop doing that you will know …the pod people got me.