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 

The Stone Soup Method

Once upon a time a poor man entered a village and asked if the villagers had any food to spare. The villagers said no. It had been a hard winter and each family was hoarding what little they had. The village was small and the man was strange so though they would not help him, they began to watch him.  Perhaps he would leave if no food was forthcoming or perhaps he would try to steal.   The man did neither of these. He merely gathered firewood and built a fire.  He put his cooking pot in the stream and hoisted the water-filled pot to his fire.  Then while all the villagers peered around doors and out of shuttered windows, the man made a big show of searching for some rounded large stones in the stream.  He exclaimed upon finding each one. He rubbed them on his worn tunic and praised their color and delicious odor and then tipped them into his pot. 

The villagers were quite intrigued by his actions and slowly found reasons to walk past the stranger’s fire. As they would pass he would run a spoon into the water and state that his stone soup needed a little seasoning.  If only an old withered carrot or bit of potatoes were available it would be an excellent soup.  As the villagers returned to their cottages they would ponder the man’s words and realize they perhaps had something to give.  Each in turn began to offer a bit of this and that.  He would exclaim his appreciation of each ingredient. The villagers were a competitive, yet caring lot and seeing their neighbors praised encouraged them to give even more. As the day progressed the pot became thick and hard to stir. 

The stranger soon told the milling crowd the soup was perfect and ladled a generous helping of soup into everyone’s bowl.  All ate well that night filled with sustenance and camaraderie.  Everyone praised this new recipe called Stone Soup.

So how does the stone soup method apply to my work medicine?

I don’t know if you have seen me paint at a medical conference but I often think of the stranger in this tale as I paint.  When I enter a room, I come burdened with blank canvases and a heavy easel. People watch me set up my station intrigued by an artist painting at a conference.  As the conference day begins my canvas is blank then slowly the words of the speakers and attendees fill the air and I begin to paint.  Soon the attendees come to the easel and share their thoughts and feelings.  My painting fills with imagery just as the stranger’s pot fills with food.  It is an amazing process.  

In a little over two months the Partnership with Patients Summit will be held in Kansas City and we will be using the stone soup model.  We will have a gathering of the Walking Gallery, a traditional conference day and an unconference day.  People who self-define as patient/patient advocates will congregate with partners.  The partners could be providers, techies, venders, academics, organizations or health policy wonks.  We will gather together to make a conference with everyone throwing something into the pot.  There will be a non-profit partner, business partners and regular people creating a crowd-sourced and crowd-funded conference.

The idea of a stone soup/crowd-sourced conference has confused a few people.  We are once again practicing some creative destruction of the traditional form.  This event is not funded by CMS Partnership for Patients, yet we are reporting back to them and focusing on their goals.  This event is not organized by a non-profit, though the Society for Participatory Medicine has agreed to create and oversee a travel fund to help patients attend medical conferences such as this one.  Cerner is hosting us in their space and acting as a partner, but this is not a Cerner conference.  This is a patient summit; and I may be stirring the pot, but I am one of many around the fire.

The Venue

Cerner has graciously offered to provide the “cooking pot” for our conference in the form of their Riverside educational building.  This once was a casino many years ago, and is a rather appropriate venue to place a bet.  We are betting  that we can do much if we just work together. The building has been retrofitted with rooms and technology that supports educational opportunities. You can register for the conference on eventbrite at Partnership With Patients and ticket proceeds will pay for the overhead costs.  The overhead cost will include food, transportation, shuttles and conference materials.

Travel Scholarships

 I asked the Society of Participatory Medicine if they would consider being our non-profit partner whose responsibility would be to create a patient travel scholarship fund.  The board agreed that this was a good use of their energy and was in step with their mission.  They further added they would like to create such a fund and continue to solicit funds for future conferences.  Please send donation checks to The Society for Participatory Medicine PO Box 1183 Newburyport, MA 01950-1183.  Please make checks payable to the Society for Participatory Medicine and mark in the memo line "Travel Fund.".

Or you can donate online at the donations page, just click on the Travel Fund button. The Society for Participatory Medicine is a 501(c)3 public charity. They will present a panel discussion during the conference explaining the concept of the society and participatory medicine. For the Partnership With Patient Summit they will be offering a limited number of $500 travel grants.  The quantity they will be able to offer will be based on donation amounts they receive.  Those who wish to receive such grants will write an essay explaining their need. Grantees will be chosen based on review by a committee from the Society.   

I am asking you today to please donate to this fund.  No amount is too small.  Everything is appreciated.  If you are able to give more that is wonderful. 

The Walking Gallery

On Friday night September 21^st,  we will have a Kansas City gathering of The Walking Gallery.  This will take place at the Kansas City Marriot.  I will be asking for financial support to cover expenses for this venue on Medstartr, a new funding model created by Alex Fair.

   The Traditional Conference Day

On Saturday the 22^nd of Septemeber  we will have a conference day that will break into three tracks focusing on HIT, Patient Quality/Safety and Media/Message.  These sessions will be taught by many different individuals who are volunteering their time and are leaders in their fields.  I will post the full agenda as it forms.

The Unconference

Mark Scrimshire and Maumi J.Cannell Chatterton will be hosting a HealthCamp KC unconference on Sunday the 23rd. That is the ingredient they are adding to this stew of advocacy.  

Speakers Boot Camp

Simultaneously, patient speakers will be given the opportunity to present 5 minute speeches during a patient speaking session. These speeches will be recorded by Cerner staff and uploaded to youtube.  These speeches will be a great asset to beginning speakers who have just joined Speakerlink.org and are building up their online presence.

Many other folks have offered their time and skills to help this process.  As they send me their offerings I will post them here, but suffice to say we are making a lovely dish. 

By the way the hashtag for this event on Twitter is #cinderblocks.  It rather fits doesn’t it? When making a stone soup, you must begin with stones.

And this story began many years ago when a little girl was in a class without books shelves...


When I was a child I went to an elementary school that had few resources.  In fifth grade our class was donated a large amount of books.  We were very pleased to have them, but we had no bookshelves on which to place them.  My teacher was very enterprising though, and she contacted the local lumberyard and requested they donate some two by fours and cinder blocks so we could make shelves.  The lumberyard manger said yes with one caveat, we would have to pick up the supplies.

That year our fifth grade class had a field trip.  

We left the school as a class with our strong backs and eager minds. We walked to the lumberyard.  Some of us grabbed the two by fours, some of us cinder blocks and some us combined the two to make a carry yoke for two students to heft.   We walked those blocks all the way back to school and up three flights of stairs.  Then we assembled those shelves and placed the books upon them.  We stood back and looked proudly at our work.  I cannot believe there was a class anywhere else in the entire nation who cherished their bookshelves as much as we did ours.

We loved those shelves because we overcame adversity and made that which we needed.  It wasn't pretty, it wasn’t perfect, but it was ours. 

Yep #cinderblocks is perfect.

Play Ball: Clay Patterson's Jacket

On June 1^st, 2011 just days shy of the Walking Gallery, I flew out the Kansas City to perform a speech before 650 developers/programmers who work for Cerner.  I even painted two jackets in my hotel room while preparing for my speech.  This would be my third speech presented before the staff and clients of Cerner. 

I had been invited to deliver my first Cerner speech at a Meaningful Use Summit on the Cerner Campus by Roy Foster in Kansas City, Missouri exactly a year before.   The Cerner Campus amazed me. It was designed to visually combine elements of art, medicine and technology.   My Cerner speech was the first keynote speech I ever gave.  It was the first time I designed my own power point.  It was the first time I flew out of state to give a speech.   

And it was the first time I met Clay Patterson.

I vividly remember meeting Clay.  He was introduced to me as an excellent IT professional working on new programs within Cerner.  We shook hands and he began to explain his ideas.  He gestured with animation at the display screen, his boyish good looks and the sparkle in his eye made me feel at times as though I was speaking to a middle school student after winning the big game rather than a most successful under-40 Kansas City businessman.   I got to speak to him quite a bit about the ideas he had and how they could change the future of patient care.  I had recently discovered the differences between a legacy EMR and a cloud-based provider. I intently listened to Clay engaged by his explanation of Cerner.   I also learned that Clay was a scion: his father Neal Patterson was CEO of Cerner.  Most importantly, I learned that Clay’s deep dedication to the patient perspective in electronic medical records sprang from a wellspring of love.  Clay’s step-mother has cancer.

And months later this vision of a helpful, boyish and exuberant Clay Patterson would roll within my mind and become part of one of my favorite painting’s “The Menu Set.” I would write about that painting in this post:

WEDNESDAY, MARCH 16, 2011

The Cake is a Lie: Thoughts on Incentives and Change

  I would explain this painting at the different locations in which it has been shown.  I would say Clay Patterson from Cerner is in the picture.  HIT people in the know would often correct me, “ You must mean Neal Patterson.” No, I would say.  I mean Clay Patterson, the son.

I was invited once again to speak before Cerner in early October 2010.  I flew back to Kansas City and presented as the member of a panel of speakers as part of the Cerner Annual Conference in Kansas City.   I normally dress in black dresses with a conservative blazer.  But at this event, I wore the brightest shade pumpkin orange.  I felt sort of conspicuous, but thought it is October.  When I arrived at the event I was amazed to see that same shade of orange everywhere!  Every member of the Cerner teams in every booth of the exhibition floor was wearing that exact same shade.  Clay‘s team asked me how I knew to dress in “the color of the day?”  I blushed, and told them I just felt that I was supposed to wear this color.

After presenting my speech, Clay and his team took me around the entire exhibition hall.  I was amazed by many of the things I saw.  I was very taken with a visual display screen depicting the clinical decision support tool entitled Discern.  As I stood at Clay’s side, I looked up at the oversized screen and stared at the blocks of color.  And like a penitent standing before a stained glass window, I asked Clay if they had created anything like this for patient decision support.  He said no, this was designed for Doctors.  “Interesting,” I said to Clay.  “Do you know what the word Discern means to many people?  It means to hear the word of God.”

And finally, I was back in Kansas City in June 2011, to speak yet again.  In the months between I kept in contact with Clay during a series of emails and tweets.  And I was so happy to have dinner with Clay, Scott Ackerson and Brian Carter.  It was a brilliant and freewheeling conversation in which the seeds of a painting were planted.  And from that conversation and my trips to Cerner a jacket painting was created.

This is Play Ball: Clay Patterson’s Jacket. 

In this painting Clay is no longer the young man of the Menu Set.  He is no longer smiling in good humor, while being ignored by two clinicians.  He is now an adult confident leader, ready to play ball.  He holds his bat in a nonchalant fashion over his shoulder as his far-seeing eyes gaze into the distance.  

You see Cerner may only be an EMR company, but within their company they created a healthy living initiative tied into their patient portal and electronic health record.  It is called the Slimdown Throwdown.   It is crisp baseball themed website design brought to you by Scott Ackerson’s design group in Cerner.  Within the competition employee teams compete against each other in a physician reported weight-loss challenge.  The winning team is awarded an all expenses paid vacation.  This web and EHR supported competition will soon be able to leave the confines of Cerner and create health challenges through out Kansas City.

In Clay’s other hand he holds the Cerner Health and Wellness Card.  We spoke quite a bit about this card at dinner as Brian fished his out of his pocket and told me to try it out.  I am familiar with such cards.  They are used by many systems in Europe and some in the US to allow for ease of check in and payment.  But Brian explained this card also functioned as a first responder emergency card.  He encouraged me to flip-over the card and use my smart phone to bring up his record.  I couldn’t believe it.  Within moments I was looking at any information that Brian Carter had wanted a first responder who was treating him to see immediately.  It was amazing.

Behind Clay there is a scoreboard.   Now things get really interesting. 

There are 650 at bat representing the developers who saw my speech.     The traditional scoring fields have been replaced by CPOE, EHR, HIE, CDS and HIT.  The scores are filled with a continual chain of ones and zeros.  This is a binary scoreboard and beneath the scoreboard an infinite stream of Matrix-like code descends.  One of the only scoring fields that remain from a traditional board is that of errors.  But that field is answered with a question mark, as we do not know the extent of errors with medicals records that remain opaque to patients.

There are two teams at the Cerner field and they are both called home.  If you look above, this dichotomy of form is repeated.  On the left is the old Cerner logo, with all of its corporate angular harshness.  On the right it the new Cerner logo billowing out like a ribbon of welcome.  This is a time of change of within Cerner. They have issued a throw down challenge at themselves.  I am very interested to see what weight shall be jettisoned in the days and months ahead as each team fights for its dream.

I presented my speech at Cerner in the Cerner continuing educational facility on the Riverfront property and former address of Sam’s Town Casino in North Kansas City.  Before entering the building, I was inspired the echoing silence of the large empty parking garage: a space designed for a riverboat that was no longer there.  I felt the powerful ripples in time as an empty Cerner parking lot reflected the potential energy of those who were not there in person but were very much present online.  That potential energy has power to change way we do medicine and view patient participation within electronic health records.

And within an hour I had another first due to giving a speech at Cerner.  I was trending on Twitter.  I was so happy to present, and overjoyed that Clay gave me his jacket to paint.  When he gave his jacket to me I told him how much I loved the facility.  I said I could see it as a Kansas City technology Hub, I could see it as the home of Health 2.0 Kansas City.  I could see it as a children’s museum focusing on the intersection of electronic health records and mobile health.  Perfectly designed for the young boy depicted in this painting.   Think Kaiser Center for Total Health, but even cooler, with more neon lighting and some music from Tron.

Some of the Cerner team looked at me quizzically, “ You do know this is just an old failed casino, right?” 

But I see with new eyes. 

I see what can be without old prejudice.  When I look at Cerner I don’t see an old legacy EMR system.  I see a future cloud/ legacy composite that could save lives.  I see the shedding of a logo that was more about corporate power and less about sharing.  I see a company that has invited me: Little Miss A-type, the painting activist, the one who tells it as she sees it.  They have invited me to speak three times before thousands of people.

And when I see Clay Patterson, I don’t just see a scion.  I see a man ready to play ball.