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 Island of New Jersey: HIMSS day 2

I rose early on February 23^rd and weighed down with luggage and painting gear trudged through the hotel lobbies and casino floor to the room in which I would be presenting my speech at HIMSS.  As I walked along, I noticed that the man in front of me had the tailor’s tacking stitches still in place on his suit.  I mentioned it to him and he thanked me profusely as he wanted to make a good impression that day.  Not long after, a woman mentioned to me that my large backpack was causing my skirt to rise in the back.  I readjusted skirt and bags and thanked her.  My son would say that’s karma.  I would say it is taking care of one another.

I was so excited to see many members of the gallery filing in to attend my session and was uplifted by their well wishes

As I arrived in my presentation room, I said hi to David Collins from HIMSS.  Then immediately began setting up my easel to paint that day.  I was the first Keynote in the session called Leading From the Future. Fellow Walking Gallery member Donna Scott introduced me.

Dr. to Dr.

View more presentations from Regina Holliday

I presented my speech combining together our personal patient story with the world of HIT using icons of pop-culture and images of art. 

The next keynote was Regina Benjamin, and I painted her Journey to Joy.

Soon there was a break for lunch, which I enjoyed in the company of Mary Ann Sterling.  Then I ran over to the room where Todd Park was supposed to speak, as I wanted to hand him his gallery jacket. 



When I arrived I saw Wil Yu from ONC speaking with HIMSS Staff and I asked if I could hand Todd his jacket backstage. 

They thought it would be even better if I handed it to him onstage.  So I surprised Todd with his jacket right before he began his speech.  It was a beautiful moment.  Then I went back to paint the next panel at in the Leading From the Future venue.

I began the painting “The Island of New Jersey” based on the presentation "Creating a Framework for Patient-Centered Health Information Exchange."  Linda Reed, RN, MBA, FCHIME, Vice President/CIO, Atlantic Health System, Robert Irwin, CIO, Robert Wood Johnson University Hospital and Lou Hermans, VP & CIO, JFK Health System delivered this presentation.  

I listened to member after member stress the name New Jersey far more than the concept of HIE (Health Information Exchanges) and so I began to paint a lonely island.  The focus of the speech was supposed to be: “The exchange of health information is important to our healthcare system, but more important still is helping patients become engaged, active participants in their care. As organizations exchange information, how can they ensure that the patient remains at the center of the HIE?“

Well, that was supposed to be the focus…

I began by painting a patient in the center of the island.  He looks slightly worried and is holding a puzzle piece.  He is the missing piece of the puzzle of HIE.  The panel spoke of the importance of e- prescribing, and coordination of the care team and so I began painting pills and doctors.  Then they spoke about the importance of some kind of patient portal and I painted a laptop computer, the blue button symbol and a scrolling patient story.  One member stated that patients could provide another set of eyes if we just let them see the medical record.  I painted a set of eyes to represent this concept.

Soon Q & A began and things got really interesting. 

Ileana Balcu or @yogileanna asked questions from the audience about the poor communication of the current system.  The panel answered broadly suggesting portal solutions for facilities in general.  Ileana then made it very clear that she was a patient in New Jersey using their system and it did not work well. 

The conversation devolved into a conversation about legal ramifications of data sharing and a lawyer entered the picture.

Then a member of the panel uttered the phrase I absolutely detest: “Patients need more skin in the game.”  So I wrote that phrase upon the Island of New Jersey.  Then I painted skin.  I painted skin around the eyes above and surrounding the blue button.  Now it seemed as though the blue button was less of a portal, than it was a ball gag wedged between the lips of a patient.  It is not enough to pour data into us; we must be able to respond back. 

An HIE must function as an exchange between provider-to-provider and patient to provider.  The data waves pound upon the Island of New Jersey and surround it.  How will it communicate with the outside world filled with patients?

Next Mark Scrimshire, co-founder HealthCamp Foundation spoke about the intersection of social media and patient engagement.

Empowering Health Care Engagement

View more presentations from Mark Scrimshire

He described a new concept called AEIOU a recipe for engagement.  Actionable, Easy, Immediate, Open and Unobtrusive. So in the painting I created #HIMSS12, a ship of social media propelled by the twin sails of facebook and twitter.  Upon the ship a patient reaches out to the island of New Jersey and tries to communicate.  The ship is embraced by the data waves. 

Finally Rick Skinner, VP/CIO of Cancer Care Ontario, Cancer Care Ontario finished the day by telling us about healthcare providers who are engaging their patients through social media and other strategies.  Then the attendees filed out of the room.  I spent the next hour finishing the paintings as the tech team worked around me on the next day’s presentations and the custodial staff threw away the detritus of a conference.  Around 6:30pm I cleaned my brushes and said good-bye to the nice fellows running the sound system.  I was alone with my luggage preparing to spend an evening in the airport before my red-eye back to DC.

Then Antonio Fernandez from the Puerto Rico REC called me.  He asked if I would join the Puerto Rico team for dinner. I said yes and we had a lovely evening talking about what health is all about: friendship and community.

Half Past Midnight: Mark's Jacket

When my eldest son Freddie was born, my Mother-in-law Joan desperately wanted to create a name for him that was all her own.  So she began calling him her “little blue-eyed angel.”  That worked for a while, until he was able to talk.  He would often grimace or look at her with worry when she used her loving name for him.  One day he told her, “I’m not angel, and he is scary.”  Have I mentioned that Fred was writing a dissertation on the Buffy the Vampire Slayer at this time?  He was often watching episodes of Buffy and …Angel.  You know, the blood-sucking vampire who started out brooding, turned evil, and then went back to brooding?  No wonder, Freddie did not like the pet name his Grandmother had bestowed upon him, it was a matter of context.

Well a few years later Joan was given another opportunity; we had a second son named Isaac.  She began calling him her “little blue button.”  He too put up with it, until he could speak.  He told her, “I’s not a blue button, I’s an explosion button.”  Then he threw his arms up in the air to mime a massive explosion.  At that point Joan gave up.  I thought that was the end of the Blue Button.

But lives change, and children grow.  Yesterday, I talked of Blue Buttons again but this time it was with a film crew who are working on a short video for the Markle Foundation.  The Blue Button is currently used within the Veterans Administration to provide vets with a complete download of their medical records.  It is a major step forward in information access within the patient community. The VA developed the Blue Button working with the Centers for Medicare and Medicaid Services (CMS), and the Department of Defense, and the Markle Foundation's Consumer Engagement Workgroup.   I was glad to get a chance to speak with them as I was designing a jacket for Mark Scrimshire  (@ekivemark on Twitter) the creator of Health Camp DC for his participation in The Walking Gallery.  

After the film crew left our tiny apartment, I celebrated my birthday by finishing the painting on Mark’s jacket. Mark’s jacket is leather one.   This is somewhat not quite the vision of The Walking Gallery, but it is a fine leather jacket, almost a business suit.  Mark loved this jacket, and was saddened when he placed a nametag upon it and ruined the front left lapel area.  The residue left a very obvious mark, and Mark’s beloved jacket was relegated to the dark inner recesses of his closet.  Then I told him about the Gallery.  The jacket was saved!  I painted a little logo on the front to hide the offending blemish.  Then painted the back with Mark’s message.

This is Half Past Midnight.  In this painting, time is flying.  The blue flames and heart of health camp are in the wake of the clock’s journey.  Numbers four through twelve on the clock-face are written in Roman numerals.  I wrote the numbers in this way to denote a file conversion and the toppling of an antiquated system of thought.  I learned how to tell time on a Roman Numeral Clock and remember the painful thought process as I converted the concept of time into a number sequence and then converted that into its Roman numeral equivalent, quite a heady brew for a five year-old’s mind.   I think it is a good visual of the translating challenges we face as we use ASKII files and claims based data and try to utilize them in a functioning personal health record.  

In the center of the clock face a female patient flies posed like Superman.  Her foot points down to VI, as her arm points to XII.  In her other arm carries a baby pressed close to her ribs.  The numerals I, II and III, have been replaced by buttons; First the Blue Button, next the Green Button and finally the White Button.  These buttons form the Rainbow Button Initiative. 

On March 21^st 2011, Mark had attended Health 2.0 in San Diego.  There he heard a lot about the Blue Button.  But he also heard patient advocate Dave De Bronkhart speak about a potential new button:

“At a recent round table looking at Patient Centric Health Care. Dave DeBronkhart (@epatientdave) mentioned the idea he and some Health Change Advocates had proposed of the Green Button. The purpose being to allow people to easily share their health data in anonomized form for research and other purposes.  I mentioned this at the Patients 2.0 session and connected this with another initiative....”

#Patients20 @health2con The Rainbow Button Initiative- build on @toddpark idea.Hosted by Healthca.mp Foundation

by Mark Scrimshire

Soon after he added to the conversation with the concept of  a white button:

“The White Button builds on the concepts behind the Direct Project which is about creating "specifications for a secure, scalable, standards-based way to establish universal health addressing and transport for participants (including providers, laboratories, hospitals, pharmacies and patients) to send encrypted health information directly to known, trusted recipients over the Internet. The Network is a set of standards, services and policies that enable secure health information exchange over the Internet. The project itself will not run health information exchange services. Several Federal agencies and healthcare organizations are already using NHIN standards to exchange information amongst themselves and their partners. The Direct Project will expand the standards and service descriptions available to address the key Stage 1 requirements for Meaningful Use, and provide an easy "on-ramp" for a wide set of providers and organizations looking to adopt. At the conclusion of this project, there will be one nationwide exchange, consisting of the organizations that have come together in a common policy framework to implement the standards and services. This project is open government, and as such, contains avenues for a broad range of public participation. See below for more information on participation.

The simple idea is to take the concept of the Direct Project and surface it for Patients as a White Button.  When you put these together you have the Rainbow Button Initiative as a simple concept for Patients to manage their Health Data.  Let's work on these ideas under the auspices of the HealthCamp Foundation. We can progress the ideas at upcoming HealthCamps and provide an update at HealthCampSFBay and Patients 2.0 in conjunction with the Health 2.0 Conference this coming September.” ~Mark Skrimshire

So on this jacket, Mark’s Rainbow Button initiative begins.  His vision could change the way patients receive their data.  It demands timely access while channeling the flow in helpful ways.  And that is the difference between a tool that can help us and a button that leads to a random explosion of data.