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Thursday, June 14, 2012

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 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.

out of office


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.

Kathleen at the Mural

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.
Untitled

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.

Pat's tweet

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. 

Getting ready to speak


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.









45 comments:

  1. Regina, thanks for the great follow-up and communication. If you weren't so busy being a change agent, you could have been a news reporter :).

    Not sure how you get all this done in a day, but I'm grateful. I love cinderblock shelves...they get the job done. Count me in.

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    1. Thanks Pat! I was on the newspaper staff in high school, I actually ended up in the principal's office for wanting to publish the results of school's wellness check. Sadly there is no 1st Amendment rights for high school reporters. :( They pulled the article, one reason I love social media! Here we can speak!

      I am so glad you are part of this!

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  2. Hey, Regina,
    I'm in KC. What can I do to help?

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    1. Great!!! You think you could be one of the speakers on the Patient Safety Track?

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    2. Jari,

      I'm also in KC. Maybe those of us who are local can do some hospitality stuff.

      You can reach me through email ann at healthybalancedlife.com

      Warmly,
      Ann

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  3. Hey Regina - I really love all that you're doing. I applied for the P4P summit and got the rejection email. For whatever reason, I was never told about the webinar, where I'd likely have joined your insurrection. I'm definitely interested in learning more about your plans for this Summit and will help however I can.

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    1. Great! It is nice to hear from another person avid for P4P. That was a hard form to fill out in little time. I am doing my best to make sure the next call is twitter friendly b/c we must push this out bigger. As far as Summit, I will post you with next steps!

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  4. This is very exciting! I live in Kansas City (a suburb on the Kansas side) and would love to be part of this. Please put me to work! You can find me at somebodyhealme.com and dianalee.net

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    1. Oh, I meant to mention, I'm an attorney, patient advocate and health blogger.

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    2. Oh this is great!!! I just added you to the will help and live in KC list. Yay!

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  5. R, let me know what I can do to help. These words resonate: "I see what can be without old prejudice." Health thrives in an open ecosystem, breaking silos, stereotypes, and yes, prejudice. Thanks for articulating that. JSK

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    1. Oh, thank you! There are so many real barriers in the world of patient advocacy, lets remove those that only exist within our minds. I look forward to your amazing advice on this topic.

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  6. How exciting... I agree with JSK ... wonderfully articulated.
    Howard

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  7. I might not be able to travel to the summit, but I will carry any cinderblocks that might help! Wow, thanks for all the work you are doing and so quickly Regina. It reminds a patient like myself, that there is always hope!

    Susan Nelsen
    (Brain cancer patient)

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    Replies
    1. Dear Susan,

      We would love your online help to promote this. Please watch for the next post. That should have a greater idea of content and the eventbrite link. We will also be looking funding and in many ways it will not be traditional...

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  8. Regina, please put me on the list to help in any way i can! This is a true tectonic shift opportunity, and I want to help supply as much shift-leverage as possible. I am SO in =)

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  9. Nice Month Regina! I am not sure if I can come to KC, but would love to have your Sunshine Band in NYC for our empowered patient panel on July 31st and review the most impactful changes we can all get behind. We will pass the word along to our members as well.

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    1. Alex, I would love to be there but you scheduled your event while I am in Australia!!! Perhaps you could show a video of me talking about this and the work you do?

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  10. Regina - This is awesome. I particularly like this paragraph.

    "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."

    Wouldn't it be great if there were attractive, eye-catching posters that would signal to patients that this is a healthcare organization that is patient-centric. I'd encourage this to be multi-modal -- e.g., have it be a widget that healthcare providers could add to their website that could be updated remotely.

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    1. The posters will be great! It will definitely signal in a very visual way that this facility is patient engaged! I am very interested in your widget idea. Do you have some sample sights that do this you could point me to?

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    2. Nice motorbikes but its quite expensive.But also this will depend what type of journeying or actions you strategy to do.
      Locksmith Washington DC

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  11. Regina--speaking as someone who knows something about conferences, this proves to me that you really are nuts! (You know I mean that in a wonderful way)

    Let me know how I can help....

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    1. :) You know the definition of insanity is doing the same thing again and again and expecting a new result. This is totally new! So not to worry, I am not crazy, just fond of ridiculously hard work and massive collaboration. Who is the Health 2.0 Chapter point of contact person in KC? We need a Health 2.0 presence at this event. Also, love to kibitz about venders who might want to partner/sponsor patient travel....

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  12. Regina,

    I'm also local to Kansas City and would love to help. Unfortunately, that weekend is also the Des Moines Take Control of Your Diabetes (www.tcoyd.com) event where I am schedule to be on a speaker panel about social media and online support. I hope to be able to attend any Friday sessions.

    feel free to let me know if I can help in anyway

    Scott Strange

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    1. Well, there will be a lot of pre-event work as well as stuff you could do on Friday. Good luck at the Des Moines event!

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  13. Regina:

    Have cinderblock. Have skills. Will travel. Will help. Contact me @produceconsume.

    Lisa

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  14. I am not really sure what the goal is but count me in! There were over 900 of us at the Patient and Family Caregiver conference (most of the S4PM were at the much more trendy Health Data Initiative)in DC last week sharing stories of successful patient centered care and strategies to implement it.

    There are also already literally thousands of people working all across the US on patient safety , quality and patient engagement at the local and state level - it might make sense work with those organizations as well vs reinventing the wheel?

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    1. Great! I really wanted to do IPFCC conference too but I had already committed to HDI. Ideally they should have been staggered so folks could do both. We need more advocates with feet in both worlds, like you!

      As far as wheels not we are not re-creating, we are calibrating.

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  15. Woman thou hast no kryptonite to cease your movement!

    I am blessed and thankful to know you and have you be a wonderful mentor on this road from patient to advocacy.

    No idea how I'm getting to Kansas, but I'll click my snazzy red heels & figure out a way. Watch out Toto!

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    1. Tiffany,

      Come, come, come! I can add you to my list of amazing folks I get to meet in person!

      Ann

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  16. Regina,
    Thank you for showing specifically how the Partnership With Patients Summit in Kansas City is being born. There were so many valuable collaborations/Sessions that were taking place during our June, 4 #HCDC HealthcampDC I wish I could have attended each session. Thank you for telling us all of the details of the story. This is just the beginning.

    You are our author helping us add not only our narrative but also the illustrations that help us better focus and see the truth.

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    1. Thank you so much Lisa!! It was so good to have you here no matter how brief!

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  17. I am so glad that there are so many voices joining this campaign! Shining sunlight on patient harm is the best way to combat it. I am so happy you are part of this epic struggle.

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  18. Sometimes it's the frustrating calls that make the most difference. You spun gold.

    Wish I could have heard the call, but love reading the journey you've taken since. How can I help?

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    1. You can learn a lot from bad call. I am glad we are using this to grow even stronger. It is amazing how many connections have been made since that call. We would love you to blog on this and your help in design would be greatly appreciated!

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  19. You are working wonders! I have posted about the conference on my rare cancer blog http://cheekylibrarian.blogspot.com, asking for others to head to KC if they can. This librarian is at your disposal - let me know if I can assist. I have it on good authority that you can create teams to move mountains one cinderblock at a time, and it would be an honor to be on a team!

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    1. Yippee! That is great we could really use your help! If you could email me that would be great!

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  20. Didn't know about this Kansas City event until I pulled on the threads of your tweet late last week. I am so very excited! Please let me know how I can help you with this!

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  21. Wow! This looks awesome! I'm in Kansas City, and I want to help. I'm a music therapist - do you want a drum circle?

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  22. Hi Regina,

    Great blog and I hope can help too, I'm living in Kansas City :)

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