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 21 through September 23 to present speeches on Health Information Technology, Patient Safety and Quality and Media and the Message of Patient Advocacy.

Partnership With Patients

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.

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.

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

The conference hashtag is #cinderblocks on Twitter.

Join our Facebook group!

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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 4×4 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 Panel: What does tech have to do with it? Rosh Rubin and Joe Ketcherside

Patient Quality and Safety Room A
Session 3
12:30- 1:45 Device Safety Panel: Tobia Gilk on MRI, Joleene 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.

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

This conference is two-fold in its mission. We will be working on strategies for a grassroots 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.

Hope to see you there!

Plans for the patient summit to be held in Kansas City, Missouri are shaping up nicely and hopefully you are starting to make your plans to be there. The opportunities for patients to come together and have real dialogue about how we can create a true patient engagement network is exciting to me. I have just a few reminders and a new update for you today.

Travel Fund

The Society of Participatory Medicine is 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. You can 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 on their site.

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.

Seeking a Roommate for the Summit?

One of the ways we can all make the Summit more aFfordable is to consider having a roommate. Thanks to Trisha Torrey with AdvoConnection, we have a way to find a roommate match for this meeting! If you’re interested in finding a roommate, you can go to the Roommate Connection she has set up and enter your information. Once you’ve done that, you can also browse for others who are seeking a roommate. Hopefully everyone who wants a roommate will be able to find one. Thanks, Trisha for doing this!

Registration

If you haven’t registered, now’s the time to make that commitment to being a part of this event. Tickets are selling fast and we hope you’ll be a part of this! Register today to assure you spot at the summit!

Here’s the latest update from Regina Holliday.

I have great news! After years about talking about the need for a Patient Travel Scholarships, they are becoming a reality!

For many years patients have wanted to attend medical conferences so they could represent the patient view at such venues. Often they would be accepted to attend at a reduced rate but found themselves unable to cover the transportation and lodging costs associated with such events.

I am organizing a Partnership with Patients Summit in Kansas City in September.

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 on their site.

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!

Thank you and the society for supporting the patient voice at medical conferences.

This post is an update on the activities of Partnership with Patients so far, written by Regina Holliday.

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 cinderblocks 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 cinderblocks 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.

Recently, I wrote Pecking Order, a post recounting a webinar call on May 22nd between patients, a contracted PR firm and CMS officials. The call was supposed to be a collaborative webinar session replacing an in person patient summit due to severe restrictions on federal travel. Sadly during the call patients did not have much time to speak. That changed an hour and a half in, when I spoke out. The patients took over the call and spoke about our views on the CMS funded initiative Partnership for Patients.

It became a call to action.

In the 22 days hence we have done quite a bit.

On May 22 we grabbed the domain name for Partnership with Patients and began the Facebook group. At this point there are over 300 members in the Facebook group from every field of healthcare: patients, nurses, programmers, doctors, venders, transcriptionists and lawyers.

On May 23rd I posted Pecking Order.

On Thursday May 24th I spoke with Kathleen Siedlecki on the phone. I encouraged her and her team to attend Mark Scrimshire’s Healthcamp on June 4th in DC.

On Friday May 25th I spoke to Dennis Wagner, co-director of the Partnership for Patients Initiative. He apologized about the direction the webinar had taken. He also said he would be joining the Walking Gallery. I told Dennis we planned to crowd source patient ideas for how to best promote this patient safety agenda. We scheduled a meeting with the P4P team at CMS offices on June 13th.

Over Memorial Day weekend, Kathy Nicholls, CMT, AHDI-F, Certified Inbound Marketing Professional, was hard at work volunteering her time to build the Partnership With Patients Web Page. We bounced emails back all weekend. I also spoke with advocates such as Helen Haskell and Julia Hallisy by phone. Many of the advocates like Martin Hatlie, Pat Mastors and Amy Berman, that were part of the original call emailed back and forth throughout this time and in a spirit of sharing I looped the whole PR team into the email thread. I got Out of Office replies from them all.

It was a holiday weekend, but for many advocates this is more than a job, it is a mission that we ply 24-7.

By May 31st the Partnership with Patients webpage was up.

Friday June 1st, Kathleen Siedlecki, who ran the P4P webinar call, visited the mural 73cents. I heard about the constraints both she and the government work within. More than ever, I appreciated the freedom of being an independent advocate that collaborates with others.

Saturday, June 2nd, I spoke with Chuck Denham, MD from TMIT and Jeni Dingman, patient advocate about this new collaboration.

June 3rd -6th, Lori Nerbonne and Lisa Morrise would attend the IPFCC (Institute for Patient and Family Centered Care) Conference. And crowd source thoughts there.

DC Health Week HealthCamp – Walking Gallery 13205
Monday June 4th, During the HealthcampDC we created a collaborative dialog in real-time and designed a session on the spot talking about Partnership with Patients and Partnership for Patients. Kathleen Siedlecki attended, as did many advocates. Attendees included Ted Eytan MD, Whitney Zatzkin, Greg Masters, Kait B. Roe, Susan Hull RN, Fred Trotter, Kristen Andrews, Robin Miles-McLean, Tiffany Peterson and Pat Salber MD.

We were trying to build a grass roots strategy aligned with CMS and ONC goals ideally within one week. We wanted to inspire regular folk to join the movement, like Robin Miles-McLean who jumped in feet first. Gregg Masters spoke about videos that could engage. We spoke about connecting communities and connecting forces. We spoke about sharing info on up coming events, as we did not know when meetings and conferences were being held both locally and nationally.

Fred Trotter told us about his focus on writing software for patients that reduced medical error. We spoke about bringing the e-patient community into this dialog. Susan Hull shared her experience of sitting on airplane ride beside a mother of 2 kids with cystic fibrosis, the mother had the marvelous idea she should administer drugs at the hospital and receive education she could carry home.

We spoke about creating a patient safety poster series for placing hospitals that are visually stimulating and not patronizing. These posters could be images donated by artists. We also could create a competition; young children could enter and receive a prize for best posters that support the Partnership for Patients initiative. We acknowledged that many patients do not know their rights or safe practices within a hospital setting. We also spoke about QR code hijacking and other edgy ways to get the message across.

1-800 number for healthcare harm was an idea that was very well liked by the group. We also wondered if that could be used to create a database of regional healthcare harm. We talked about the potential of viral twitter attacks on hospitals with reports of harm, yet are not responding to those they injure.

We talked about the power of Engage with Grace. We also talked about Honoring Choices programming from PBS coming out of Minnesota and Gunderson Lutheran’s amazing compliance with Advance Directives.

We spoke about a board certification in patient safety that is now available and wondered if any patient had taken the course. We also spoke about SpeakerLink.org and the importance of including patients as paid speakers. We spoke about the Plantree model of care and IHI open school and how that applies to this movement. We finished up focusing on a photo resource that would show real pictures of patient care. That has already begun on flickr, but it needs to be on Pinterest as well.

From that discussion and prior phone discussions with other advocates, I created this power point that was presented before CMS: Partnership for Patients meeting yesterday.

It was well received.

Dennis Wagner said he could see that some of these suggestions were immediately doable. He said the next slide set he designed would have no stock photography within it, only crowd-sourced real pictures. He would visit our flickr page and learn more.

The CMS team re-iterated that they did not believe the next meeting would be an in person one and it would need to be webinar again. I then specified they must try to open it up to more people, so they should create a twitter hashtag so many more voices can be part of this discussion. Kathleen thanked me for coming to the meeting and said she really enjoyed hearing our strong voice in this space.

I also announced that we were creating our own Partnership With Patients Summit in Kansas City September 21-23, 2012. I spoke with Clay Patterson and Amy Burgess at Cerner and the folks at Cerner have approved hosting us in their continuing educational facility on the Riverfront property and former address of Sam’s Town Casino in North Kansas City.

I loved that facility when I visited it one year ago. Think Kaiser Permanente Center for Total Health, but even cooler, with more neon lighting, a town square and some music from Tron. Some of the Cerner team looked at me quizzically when I told them how much I loved the space, they said, “You do know this is just an old failed casino, right?”

But I see with new eyes. I see it with the eyes that saw cinderblocks become bookshelves.

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 one company among many, many companies willing to collaborate with patients. I see what amazing things we can accomplish if we all work together and shoulder this task. I see a space where we can come together and educate patient speakers about HIT, patient safety and health policy. I see the potential of helping 200 new patients advocates as the next generation of e-Patient Dave’s, Trisha Torrey’s and Regina Holliday’s.

So here it is the ask: Who will take up their cinderblock and follow me?