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 

Trisha's Calling

In the week before the gallery gathered in Washington, DC on June 4, 2012, we walked online.  A suggestion bubbled up on the twitter feed that walkers change his or her avatar to their jacket image.  It was a great idea, as many of those who live far away cannot make it to the physical gathering.   I was a beautiful thing to watch then twitter screen fill with icon art as the gallery neared.  So many pictures, in so little space scrolled before my eyes during that time.  One avatar stood out in particular.  That was Trisha Torrey’s image; she left the world of the functional icon behind and entered the world of the sacred.   She laughed at me when I said her picture looked holy.  After all, I had painted the image; I knew exactly what it looked like.  Except, I did not know. You see, Trisha cropped off the red boarder of her jacket when she posted the image.  That changed the tones of the blues within the piece, and their intensity was less without the reflected glory of the red. Those blues had become silver and her jacket had become an Icon.

This is Trisha Torrey’s Jacket: “Every Patient’s Advocate.” 

This was the second time I painted Trisha and I doubt it will be the last.  She first appeared in all of her cheery goodness in the painting “Give Us Our DamnedData.”  She is an unusual member of the justice league of patient advocates.  Like many in this space she joined us due to a medical error.  But her case is rather unusual.  She did not have cancer.  She was misdiagnosed with a very aggressive and deadly form of cancer and urged to begin a toxic treatment immediately.  Trisha sought a second opinion of another oncologist because she felt fine and trusted her body more than the orders she had being given.  She got a copy of her lab results and the questions began to pile up as she researched the terms and words included in the report. 

Prior to her appointment with the new doctor, she was pretty sure she did not have cancer. The new doctor confirmed it.  Now this is the place in the story many folks would walk away.  Perhaps this would become fodder for future conversations during book club or a great comment to post online in response to a cancer article.

Trisha took this experience and changed her life.  She created a bridge from her old life to a new one of advocacy.  She cannot forget that moment when she was told she had a fatal disease.  She cannot get back those weeks of worry she suffered.

Have you ever held your breath while crossing a bridge?  It is a game that many children play.  It is really fun game until the day you reach a long bridge. That day it stops being fun.  It stops being fun when your vision darkens a bit around the edges and that panicked gasp bursts forward from deep inside.  At this point a child might giggle, forgetting the terror of one moment before.  But Trisha does not forget the terror of that moment she could not breathe.

So Trisha writes and Trisha speaks.  Trisha questions many things and does so in a way that is not off-putting, yet is very much filled with authority.  In this painting she is the cloud and she is the embracing bridge.  Trisha connects people and she uses the tools of online advocacy to make this connections.  She does it through her writing at Every Patient’s Advocate and her patient and caregiver resource the AdvoConnection.   Within this image she is bringing people together, both providers and patients meeting in the middle.   

Above this vignette is Trisha’s face: sacred and serene doing what she must.  Living her mission to advocate for others, for that is Trisha’s calling. 

Cinder Blocks and Patient Summits

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.

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 23^rd I posted Pecking Order.

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

On Friday May 25^th 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 31^st 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 -6^th, Lori Nerbonne and Lisa Morrise would attend the IPFCC (Institute for Patient and Family Centered Care) Conference. And crowd source thoughts there.

Monday June 4^th, 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.

Partnership with patients

View more presentations from Regina Holliday

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 cinder blocks 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? Register here.

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?  

Crossing the Quality Chasm

When I talk about shared decision-making and patient centered care, I often talk about the differences in the way doctors and plumbers speak about their work.  Especially after reading Atul Gawande’s article "Letting Go", I felt empowered to say, ”Suppose your basement was flooded and your pipes were bursting.  The plumber would not forgo or delay telling you the truth about the extent of damage due to concerns about your emotional distress.  He would not suggest just pumping in chlorine to 'medicate the pain' and ignore searching for the cause of the flooding.   He would consider you educated enough to understand the potential treatment paths.  And he would let you know all your options and give you a price estimate before beginning repair.”

So imagine my joy today at Health Affairs’ Briefing: Still Crossing the Quality Chasm, when the first speaker, Carolyn M. Clancy, Director of the Agency for Healthcare Research and Quality presented using a quote about plumbing.   ”The society which scorns excellence in plumbing as a humble activity and tolerates shoddiness in philosophy because it is an exalted activity will have neither good plumbing nor good philosophy: neither its pipes nor its theories will hold water.”

John W. Gardner

And that quote became the foundation for the painting I created today.

This morning, I dressed in my nicest business dress and carried my French-box easel in one hand and my brief case filled with paint in the other.  I climbed the carpeted steps of the Capitol Hilton Hotel and stood in line with those that came at 8:30 am to listen to sixteen speaker views on the quality chasm in medicine.  They checked me in, and I grabbed my packet.  I rapidly walked to the back of the room and began to set up my easel.  I set up next to the cameraman, as I too had come to create a picture.  Several nice Health Affairs staffers looked at me quizzically.  A couple of them even came over to talk with me.  But no one stopped me from painting, and that was good. 

I was doing something a tad subversive.  I had not been invited.  If it hadn’t been for Trisha Torrey and a blog post she had written, I would have had no idea this meeting was taking place.  

On March 31,  Trisha Torry  wrote a blog piece “Time to Recognize Us Not So Invisible Patients.”  She had been invited to attend a briefing by Health Affairs called “Still Crossing the Quality Chasm: Update on the Progress in Improving the Quality of Health Care.”  She was rather astounded when she read the speakers list.  As Trisha phrased it “VERY impressive list of speakers.  Except.... No patients.  Not one individual who can speak for patients from a patient's point of view.”   Trisha‘s  blog is well-read in the patient community.  She had hoped that with her post Health Affairs would change their lineup and include a patient speaker.  She also was hoping local DC patient advocates could attend if we were only made aware of the proceedings.

Trisha continued to blog on the topic writing:

Health Affairs Briefing: Patients Becoming Less Invisible.

Here she stated: “Eventually I received an email from Sue Ducat, representing Health Affairs, telling me that one more 'expert' had been added to the panel - someone who has proved her chops in patient safety.”   That speaker was Diane C. Pinakiewicz, President of National Patient Safety Foundation.  In addition to this speaker there would be a patient in the audience; Ilene Corina, President of PULSE of NY and long time participant of the National Patient Safety Foundation Patient and Family Advisory Council also presently a member of the NPSF Board of Governors.  

And in the back of the room, I would paint.

I was very happy that Susan Dentzer, Editor-in-Chief of Health Affairs, mentioned early on that the Twitter hash tag was #HA_Quality.  A nice twitter commentary ensued, which allowed far more patients to participate.  So between brush strokes I would periodically tweet and enjoy the give and take of social media.  At one point Christopher Fleming, Social Media Manager at Health Affairs came up to me and asked questions about my work.  He would be the only Health Affairs staffer who gave me a card.  I told him I would send him my blog as soon as it was completed and thanked him for his frequent tweeting.

I quickly painted the cliffs, the chasm and the sky.  Soon we began to hear about plumbing.  So pipe works began to emerge on the left side of the painting.    This was the patient side.  A number of patients upheld the pipe works and tried to curtail its uncontrolled gushing.  An elderly figure dangles from the pipe; he represents the 1/3 of the senior population that gets to access care. A child dangles from the man’s foot.  The child is holding a bucket under the gushing spout.  That bucket is labeled PHR.  She is trying to take some information out of the data stream as billing codes and data gush into the valley bellow.  Above him a child valiantly tries to turn the spout; she represents the 47% of children who can access care. 

Throughout the pipe works are areas of disruption that point to systematic failure as data and services drain away from their needed destinations.  Safety Net Hospitals, Ambulatory Care Settings, and medical education are suffering from a lack of clear communication between providers and patients.

In the lower left area ACO is depicted as a mythical beast, for that is how a panel speaker defined it, as she begged the moderator to forgo asking her to comment on Accountable Care Organizations.    As I tweeted this description on Twitter, @faisal_q or Faisal Qureshi responded, “@ReginaHolliday Mythical? hmm... the monster is real and it’s right in front of us.”  So I painted an ACO unicorn because our pop-culture often depicts these beasts in glitter and rainbows.  And they can be positive--Kaiser Permanente is an example of a conceptual ACO.    Elizabeth A. McGlynn, Director of the Center for Effectiveness and Safety Research at Kaiser Permanente gave a great description of this type of care model.  She explained that while calling to make one appointment she was encouraged to schedule her mammogram and other needed tests.  She described in glowing terms the power and patient-centered nature of accountable care at KP.  But unicorns can be tricky.  They are wild and complex and cannot be tamed by man.  People often forget they tend to gore to death those humans who are well-versed in the ways of the world. 

Across the chasm on the right side stands an executive juggling; He juggles the balls of trust, improvement and reporting as they circle in the air leading to RPI (robust process improvement).  I wondered as I learned about this new acronym if people considered that failure to follow these simple measures, for example hand hygiene and better hand-off communication, could lead to that much sadder acronym RIP.

Above the juggler, providers hold up a philosophy scroll.  A doctor proudly stands in the center.  To the right, a nurse or tech faces away holding up an end of the parchment.  On the left side, an informatics professional types away while balancing the sheet on her head.  The plumbing from the right side of the panel becomes an old-fashioned dip style pen.  And these words are written in cursive: “I wrote a white paper.  I wrote a white paper…” These words a cascade down the page like some academic Jack Torrance.   Again and again, as the speakers spoke I would hear about the papers they had written.  These papers seemed to be the passport to speak in such an august setting.  And I sadly thought of all the patients who would never write a white paper, but had such important things to say.

We had a break at 10:45, and I saw via email that Ilene was trying to get a question asked during Q&A.  I too had raised my hand for a question, but they had been taking few from the audience.  After the break and during the Q&A of the next session, the moderator mentioned that she would like for Ilene to get a chance to speak and ask her question.  Ilene asked what ways were the panel members involving patients directly in bridging the care chasm.  In response, one panelist mentioned that they were now involving patients in all their hospital panels.  This was the first time patients were referred to as a team member and not as a participant who needed to have better compliance.

 After 12:20, the session was running over, but the sun rose on this painting.  At this point the panel “Where Do We Go From Here? “ began.  I wondered if they had any idea about the Buffy song of the same title.  That is the song we used to dedicate the mural 73 Cents.   That is the song I am singing on the NPR broadcast of November 9, 2009.   My answer to the question was simple.  Patients and caregivers must have access to their own information and must spread the word about the need to treat patients with dignity and respect using every form of social media.

Soon Peter J. Provonost from John Hopkins University began to speak. Finally, we saw a picture of a patient. He showed the picture of a baby.   Her smiling face reminded me of the Teletubbies.  As any parent who once had an 18 month old can tell you, babies are just mesmerized by the Teletubbies and the golden sun with a baby’s face.  Oh, how it giggles and they giggle and the room fills with joy.  So there is a painting of the sun in this piece.  And that sun is also a clock that marks the time that the smiling face of Josie King stared out at us twelve feet tall upon the screen.

I was sad and angry, because by this point so many people had left.  Josie’s face should have been the first slide.  This panel should have been the first panel.  That would have centered this day and this event.   And that speaker that Trisha fought so hard to have included should not have been the last to speak.  Finally after the room cleared, I was the last to leave the hall as the hotel staff cleaned the room of the remains of breakfast.   


Patients had been left for the end, and it seemed like an afterthought.