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 

Meeting e-Patient Dave

It was the day before The Walking Gallery and I still needed to paint 15 jackets. 

On evening of June sixth my apartment was in total disarray. I was painting in the kitchen.  My friend Courtney Mazza was painting in the living room and children were running back and forth occasionally screaming for toys.  In the midst of this chaos, I heard a knock.  I thought might be the take out we had ordered, but no it was Bob Filley, Anita Samarth’s husband.   He currently works in Commercial real estate, but he majored in fine art.  He had offered weeks before to paint, and here he was in the 11^th hour.  He stood before me in the hall wearing a nice suit and lovely cotton shirt.  Behind me the room erupted with the jealous squeals of small children.

“Is it a bad time?” He asked.  I practically grabbed him out of the hallway.  “NO, it is not a bad time we would LOVE it if you could paint a jacket or two, or three.”  Bob looked around the chaos of the room, and carefully removed his jacket and nice shirt.  He stood in his t-shirt at my dining room table and began to paint.  He painted e-Patient Dave. As he painted I explained the life of e-Patient Dave.  I told him of Dave's Advocacy

"Wonder Twin powers, Activate!"

 And I told him of Dave's history of fighting cancer:

The Man Who Lived

It was amazing.  Have you ever scene that scene in a war movie where the bullets seem to be flying by the hero in slow motion while he bravely soldiers on unfazed by his surroundings?   That was Bob.

And he painted such a joyous Dave.  This is Dave De Bronkart’s Jacket by Robert J. Filley.

I love this jacket.  Bob filled the back ground with a series of descending kidneys.  He then began using sunshine tones to build up the smiling visage of Dave.  Using a wet into wet technique often used by oil artists, Bob built layer upon layer of wet paint into the shinning countenance of e-Patient Dave. He then worked a deep blue capital “E” into the background of the piece. 

Upon my table lay a piece of impressionistic fine art.  Bob finished Dave’s painting looked up and said “Next.”  Bob would finish two more jackets, before succumbing to exhaustion later that evening.

Dave loved the jacket and l wore it throughout The Walking Gallery.  But Dave and I go way back, and often it seems our stories are twined one within the other.  So, I painted Dave an additional jacket.

This is “Meeting e-Patient Dave.”

I met e-Patient Dave on May 4^th 2009.  I went on Twitter for the first time on May 3^rd, and wrote my first tweet: “I am trying to talk with Christine Kraft and epatient Dave.”  By the morning of May 4^th Dave had found me.  He sent me emails throughout the day as we exchanged details of my husband’s cancer care.  Within each missive he seemed more and more concerned. By that evening, I was talking with Dave on the phone.  By that night I was speaking with Dave’s own oncologist.

It was such a sad night.  As I talked with Dave I was making macaroni and cheese for dinner.  My three year-old Isaac was constantly wrapping his arms around me as I cooked and tried to talk.  The poor little boy he was so starved for time with Mommy in this the eighth week of his father’s hospitalization.

And as I danced around the kitchen balancing both motherhood and patient advocacy, the phone cord spiraled around us both.  As I recounted horror after horror to Dave, I looked down at my phone cord bondage.  It seemed like I was being embraced by hundreds of little “e’s.”  

That was an important night.  That night I learned about the term e-patient.  I learned about ACOR (Association of Online Cancer Resources).  I had been doing research for eight weeks but had never found ACOR.  I would converse via email with the list founder Gilles Frydman and would see post after post from people across the world fighting kidney cancer.

And I learned from Dave’s Doctor that soon it would be the end, sometimes there is nothing that can be done. Sometimes it is too late. 

So much happened on May 4^th 2009.  I stood within a kitchen wrapped within a cord of old technology whilst embracing the new.  I became an e-patient.

And two days later I would create a blog called “Regina Holliday’s Medical Advocacy Blog.” 

The weeks would pass and Fred would die, but I have never stopped talking with e-Patient Dave.  We are twined together because of Kidney cancer.  His story is light and ours is dark.  But both stories are so very important. 

So Dave has two jackets: one light and one dark, because to create great change within the culture of medicine we have to accept them both.

Not long ago Dave gave an amazing TED speech and it caused a lot of ripples in patient advocacy circles.  A few of those who felt those ripples emailed me and told me, "You should really meet this guy called e-Patient Dave."

I chuckled and said, "I have met him.  We go way back."

The Patient Speakers: More Than a Fly in The Ointment

This week I spent hours on the phone with some of the great minds working within patient advocacy.  I asked them a series of 17 questions.   Designed by the wonderful staff at TMIT (Texas Medical Institute of Technology), these questions are helping to create the nuts and bolts of an online vetted registry of Patient Speakers at a regional, national and international level.

In the midst of this process, I received a twitter mention from @cascadia also known as Sherry Reynolds.  She lead me to an article on the Health Affairs blog entitled:

Patient Advocates: Flies In The Ointment Of Evidence-Based Care ...

by Jessie Gruman.  I must admit I was rather taken aback as I follow Jesse on Twitter and she has always supported patient empowerment in the past.  Jessie Gruman is the president and founder of the Center for Advancing Health.  Its mission statement is: "CFAH conducts research, communicates findings and advocates for policies that support everyone’s ability to benefit from advances in health science."

So, I was feeling rather stabbed in the back by being called a fly, and not just a fly, but also a dead one spoiling a perfectly good ointment.  Jessie had decided to use a slightly incendiary tone in order to promote debate.  For within her post discussing the testimony of patients before the Food and Drug Administration regarding the drug Avastin, was a critique of the power of the individual patient voice in relation to the combined power of evidence based medicine and governmental regulation.  

The patient voice can be a very powerful tool.  Some may see a patient speaker as a Mayfly: here today and gone tomorrow.  They may see us as the current tale of sorrow to be trotted upon the stage and then fall into obscurity.  Or perhaps we are viewed as the buzzing fly.  The persistent drone of patient advocate babble in the background at a meeting or at a conference, not important just a nuisance.  But what does it mean to be called a fly in the ointment?  Well, that’s Biblical.   That means we have disturbed and defiled the sacred anointed oil of medicine with a corpse.

And then I realized the true power Jesse’s title. 

For my fly is Fred, and Helen Haskell’s fly is Lewis, and May Ellen Mannix‘s fly is James, and Leslie Boyd's fly is Mike and we are disturbing the ointment.  We fly throughout the nation as patient speakers trying to change the status quo from a profit-driven model of care to a patient-centered model of care.   And we form a powerful group, that combined can support evidence based medicine by aggregating our shared stories.

But before you can use our knowledge, you must be able to find us.  And once you are able to find us we must be paid based upon our experience, depth knowledge and quality of our speech.

This is a concern Dave DeBronkart, other wise known as e-Patient Dave, has been writing about since January of 2009.  

The New Life of e-Patient Dave: A Call for a Patients Speakers Bureau

That is the reason we are creating a Patient Speakers Bureau.  The decision to create such a resource was made after a conversation I had with TMIT CEO Charles Denham, MD.  He asked me what did I see as a necessary next step in patient advocacy.  I told him we needed a patient speakers bureau.  In the patient advocacy community we have been talking about this need for a number of years.  My frustration at the lack of such a resource reached its pinnacle as I did dishes one Saturday.  I received a phone call from CMS (Centers for Medicaid/Medicare Services) asking which speakers would I recommend for an event in Texas.  I was in my kitchen in Washington, DC doing dishes as my five year old played with toys upon the floor, and I was the resource for CMS to find a speaker in Texas.

I thought there must be a better way.

I knew there were amazing people throughout the country who could speak on a host of patient advocacy topics and do so from the perspective of a patient.   I knew some of them.  And Dave De Bronkart knew some of them.  And Trisha Torrey knew some of them.  And Charles Denham knew some of them.  If you knew Dave, Trisha, Chuck or Me, you could ask us for our lists.  But that is very cumbersome and it feels like we are constantly re-inventing the wheel.  The beauty of an internet resource is that it advocates 24 hours a day.  And try as hard we can to keep going, human advocates must sleep.

Clean and Simple Web Design

I asked the advocates what websites did they use and what feature was the most important.  By far and wide, the advocates were focused on a using a good search function.  They also loved data filtering and aggregation.  They thought the ability to have communication within a community was important as well.

If you have a cause you must be on Twitter.

Which social media sites do patient advocates use?  They listed Facebook, Twitter, Linkedin, Meet-Up, Slideshare, Google +, Blogger, Wordpress and Posterous as important tools in the patient advocate toolbox.  Unlike many speaker bureaus, we are focusing on promoting the speaker with a well-rounded advocacy platform.  The speech is not an end unto itself, but instead a beginning.  Most of these speakers blog and have an astute command of social media that will allow the concepts of the conference echo for weeks, months and years on the world wide web.  Indeed, hiring a speaker from those listed on this portal can increase the digital footprint of a facility often faster than is possible with their in-house social media team.

“I am one person.”

One of the benefits I often attribute to hiring a patient speaker or inviting them to attend a meeting, is the benefit of the one-person view.  Often organizations become so multifaceted and constrained by the will of the group they become handicapped in their ability to present the individual patient view.  I found it very interesting that many of the advocates I interviewed present themselves across every social media platform as themselves, seamlessly blending professional and personal lives.  The only exception was Facebook .  In about half of those interviewed they said their Facebook usage was more for friends and family with far less professional messaging.

I do not look for them; they find me.

I asked the speakers if any of them had experience with other speaker bureaus.  Most responded that they had little experience with such sites.  Some had visited the Washington Speakers Bureau, NAMI, Alzheimer’s Association and SpeakerGram.  Most of the advocates had never used such sites and relied exclusively on word of mouth to promote their speaking advocacy.

If we build it, will they learn?

I asked about any thoughts the advocates had on continuing education on patient topics and in patient speaking.  I also asked in what format should we teach such topics.  The advocate pool said text based information was a must, interspersed short video and audio clips.  They also said a webinar element both live and archived was important.  The stressed the need for small group interaction and self-directed learning.

We also queried the groups about two planned courses: “A Crash Course in n Public Speaking” and “Narrowing your Speaker Topic.”   Those surveyed said they would be very interested in such courses and would like other concepts as well.  They were interested in learning about their audiences, understanding national patient advocacy strategy, and wanted to see great speeches.  Requests were made to learn how to better harness presentation tools like Power Point, Keynote, and Prezzi.   Most responders thought a best speeches segment and  “What not to do" presented in a short video format would be well received.

Now Playing in Theaters Near You

We wanted to get a gauge on which organizations were currently inviting patient speakers and found out that there was a wide range of venues.  Many of the advocates had spoken before RWJ Foundation, IHI, HIMSS, HealthCamp, and Health 2.0.  They had spoken before hospitals, Quality Care Organizations, Beacon Communities, Legislatures, White House Initiatives, Medical Insurers, Therapy Groups, Medical Schools, Data Users Groups, Social Service Agencies, Venders and Medical Conferences.

Patient speakers were beginning to show up at many venues.  And like any good fly on the wall they were listening for more opportunities to spread the word, often handing out piles of business cards at each engagement.  They also were utilizing their social media contacts to disseminate the information gathered at each venue to spread across the many silos of thought and culture.

From Honoraria to Invoicing for Oratory

As patient advocates are viewed as more than a one-off story, their stature changes to that of a professional patient speaker.  Within this transition, a speaker goes from speaking without recompense, to speaking while receiving honoraria, to a point that their participation has become so valuable that they are working under a speakers/lecturers contract.  Many speakers are doing their advocacy speaking with little business support; I asked our pool if they would be interested in guidance and help within the world of invoicing and contracts.  Almost uniformly the survey respondent requested help.   Many wished to know current appropriate pay scales, and asked questions about tax liability.  Suggestions on bookkeeping, fee negotiation and how to deal with delinquent payment were also very much on the mind of many of the advocates.

On Ratings and Rankings

We asked speakers to consider what would be the most important elements of their speaker profile.  Several of the speakers said they were not interested in a linear format of information, but said the key elements were: Name, 3 Topics, Contact now, Photo, testimonials/Patient Story, audio/video, slideshare, website/social media, location, Bio/short CV, honoraria/speaker fee, contact email/phone and a yelp-like ranking system populated by organizations that had hired said speakers.

The group cautioned against video only, as video is blocked at many facilities.  Likewise some recommended imbedding a Twitter feed vs. a hot button link to twitter as social media sites are blocked at many institutions.  They strongly encouraged the ability to rank speakers.  Some speakers encouraged designing this site to work on smart phone platforms as many of those researching speakers may have to use their personal devices to view blocked video.

Playing “Ring Around the Rosy” on the Landing Page

I asked those surveyed if we could feature speakers on the landing page how should that be done.  This question had very divided answers.  Some thought it should be completely random, some randomized with priority, some based on audience interest using analytics, and others thought it should be based on trending interest. 

"Speak what we feel, not what we ought to say" -William Shakespeare

I asked how should these speakers be marketed and how should we promote the site.  The advocates responded overwhelmingly that they would market themselves and the others in the portal using the tools of social media, during their own speeches and while networking at conferences.  They said they would like it if TMIT would help promote, but they would use their passion, connections and grass-roots activism to promote as well.

As far as creating awareness for the site itself, they recommended a press release, emailing all contacts, partner with consumer organizations and populate the site with an exclusive list of vetted speakers.  They also recommended using technology to create widgets to imbed on sites that support our mission, tag and link back through our blogs and enable a comments section.

What shall we name the Baby?

Like any good parent who has been thinking of the upcoming birth of their child, we have been concentrating in the design and care of our site.  But it also must have a name.  We could call it many names, but the most popular were along the lines of Patient Speakers, Patient Speakers Bureau, and The Patient Voice. 

It was great to talk with so many wonderful folks during this process.  And I would be very interested read your thoughts in the comment section.  I think we are on the brink of cultural shift on how we view patient participation within medical care on a local and national policy scale.  I am glad I met Chuck Denham and the other great folks at TMIT who are realizing a dream that many of us have been hoping for these past years.   I am glad this portal can be part of that, and am proud to be a speaker as well as the “painting fly” upon the wall.


Yes, Dave wrote his post for the need for this portal back on January 24th 2009.  And that same day my husband posted this:





I cannot help but wonder how different our lives would be if this portal was around five years ago instead.  Would Fred have seen birthdays four and five as well?