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Sunday, October 28, 2012

The Conference That Felt Like a Hug.

So was Partnership With Patients September 21-23, 2012 in Kansas City a success?

We proved it was possible for a loose confederation of patients to gather and organize with little time and little funding.  We were nimble. 

It was a great gathering of lovely people from all over the nation.  Patients worked hand in hand with partners.  Each benefited from the expertise of the other.  Most of all we proved this could be done.

Remember where this saga began?  On May 22nd , we were told there was no funding to gather patients to talk about goals of the Partnership for Patients campaign.  Pat Mastors and I thought we had to do something to change this.  Kathy Nicholls helped create a website and we began to plan.   In the months hence we worked with the team from Weber-Shandwick and the Partnership for Patients team from CMS to open up communication between an ever larger group of patients.  Representatives were able to come to our Kansas City summit from both Weber-Shandwick and CMS.

PWP wordle

HealthTech Hatch: Patient Travel Scholarships

Thank you to Patricia Salber and the entire HealthTechHatch team for their dedication to go live as soon as possible, thereby ensuring we had a chance to raise the needed funds.  Thank you to all the 34 amazing people who donated to HealthTechHatch Patient Travel Fund at the Society for Participatory Medicine.  We raised $6,085.00 in approximately 2 weeks during the first weeks of public beta. 

THANK YOU! Josh Kimberg, Pat Salber, Chris Selecky, John Sullivan, Juliet Oberding, Dov Michaeli, Marty Diamond, Amy Salber, Elaine Waples, Bryan Beck, Laurie Nirenberg, Lisa Fields, Josh Krakauer, Susan Hull, Mee Elizabeth, Scot and Mitch, Megan Grangoff, Jon Mertz, Wayne Pan, Lorrie Eigles, Peter Boland, Grey Miller, Daniel van Leeuween, Ian Eslick, Kathy Nieder, Colin Hung, Maureen Bisognano, Jim Hansen, Helen Haskell, Steven Davidson, Amanda Griffith and Jamie Inman

This allowed the Society to issue 9 scholarships of 500 for e-patients to attend the event.  As we received over the required amount and as some individuals donated directly to the Society there was money left over to seed a permanent fund for patient travel at the Society for Participatory Medicine.

Thank you to our scholarship award winners for being the first e-patient travel scholars!

Amanda Greene, Richard Anderson, Evelyn McKnight, Alicia Staley, Bart Windrum, Michael Weiss, Nikolai Kirienko, Steven Baker, Winnie Tobin

Medstartr: Travel Funding for the Walking Gallery and Partnership With Patients

Thank You to Alex Fair and the entire Medstartr team for their hard work supporting us to meet our funding goal and thank you to the 90 funders who helped us go far beyond our original funding goal.  This project was funded at 219% raising $10,948.00 and broke the record for most funders and most money raised on Medstartr at the time of the project close.

THANK YOU to our amazing funders! Alex Fair, Nick Dawson, Gregg Masters, Kim Whittemore, Alexandra Yperifanos, Abby Prestin, Howard Luks, Ileana Balcu, Donna Scott, Deidre Bonnycastle, Alan Greene, Theresa Willett, Steve Sisko, Martine Ehrenclou, Benjamin Miller, Jerry Matczak, Pat Mastors, Lisa Fields, Patricia Salber, Mary Cattolico Camp, Mindy Brown, Kavita Patel, Clay Patterson, Janice McCallum, Jess Jacobs, Anette McKinnon, Roni Zeiger, Loring Day, Linda Brady, Marilyn Mann, Heather Leslie, Jon Mertz, Kristen Andrews, Sarah Kucharski, Carolyn Thomas, Sue Woods, Fred Trotter, Matthew Holt, Chiara Bell, P. F. Anderson, Phoebe Browning, Ted Eytan, Ronan Kavanagh, Nicole Dettmar, Andrew J. Rosenthal, Brian Ahier, Matthew Browning, Andre Blackman, John Moehrke, Symplur, Sherry Reynolds, Pat Mastors, Matthew Katz, Gangadhar Sulkunte, Bruce Ramshaw, Ann Becker-Schutte, Michelle Litchman, S. Turner Dean, Lisa Fields, Julia Halisy, Andrew Spong, Peter Levin, Brian Carter, Colin Hung, Kourtney Govro, Ruth Ann Crystal, Marianne Venitti, Emily Hackel, Devon Scanlon, Helen Hadley, Mike Sevilla, Joshua Rubin, Noel Eldridge, Phydian Systems, Alexandra Drance, Susan Eller, Ross Martin, Elin Silveous,, Joltdude

Thank you to everyone who supported Partnership with Patients on Eventbrite.  Many of you purchased tickets at sponsorship levels, which enabled us to pay for food, staffing and shuttles.  


Thank You! Susan Hull, Scott Strange, Francie Grace, Howard Luks, Joleen Chambers, Steven Baker, Alexandra Yperifanos, Mark Scrimshire, Maumi Cannell Chatterton, Dean Sellis, Amy Keil, Bunny Ellerin, Katrina Huckabay, Carolyn Capern, Trisha Torrey, Lisa Fields, Michael Millenson, Diane Stollenwerk, Jen McCabe, Pat Mastors, Ryan Neuhofel, Karen MacDonald, Casey Quinlan, Jerry Matczak, W. Joseph Ketcherside, Gary Takher, Jody Schoger, Gayle Sulik, Dave DeBronkart, Douglas Wager, Ken Burke, Eunita Winkey, Bridget Searles Andi Neuhofel, Marcia j. Corbett, Lesa Mitchell, Sarah Barr,  Winnie Tobin, David Voran, Roy Foster, Tiffany Peterson, Amanda Greene, Alicia Staley, Richard Anderson, Michael Weiss, Nancy Imber, Robin Miles-McLean, Karen Oliver, Linda Ketcherside, Ross Martin,  Colby Meier, Jim Hansen, Peggy Zuckerman, Evelyn McKnight, Amy Burgess, Ann Becker-Schutte, Bart Windrum, Steve Daviss, Joshua Rubin, Diana Lee, Brian Carter, Sarah Kucharski, Kait B. Roe, Olga Pierce, Erin Gilmer, Dan Ford, Erika Hanson Brown

PWP sponsors all

Thank you to our many sponsors
Cerner graciously hosted us in their educational facility as well as helped with coordination  and audio visual equipment and staff.  Cerner also gave tours of their experience theater to patient groups to better explain HIT policy in real life.  Intouch Solutions helped fund patients, promoted the event and and helped pay for food.  Pocket Health helped promote the event and paid for food during the weekend conference.  Mark Scrimshire and Maumi J Cannell Chatterton with Health Camp added one more weekend to their busy schedule and hosted our unconference day.  We owe a great deal of thanks to all the partners listed above that made this event a reality.

The Kansas City Marroitt Downtown was our conference hotel.  Even though our contingent was small, four members of the upper management of the hotel came down to thank us during The Walking Gallery.  They were honored that we chose their hotel.     

Thank You to our Bloggers and Social Media Mavens 
Many of the attendees in person or online are wonderful bloggers and here are some of their reflections on the event.  I will post other accounts as I become aware of them.

Partners: Ann Becker-Schutte who wrote about the Walking Gallery, Why Your Voice Matters and Transforming Pain Into Purpose
Joe Ketcherside: Voices Found
Mike Sevilla Partnership with patients Summit
Mark Scrimshire HCKC Recap
Bunny Ellerin Partnership With Patients: A Conference Like No Other
Gary Takher Patients Connected Like Legos
Whitney Bowman-Zatskin Regina Holliday and the Partnership with Patients

Bart Windrum Be Ahead of All Partings
Kathi Apostolidis Partnership With Patients Goes Global
Amanda Greene Nothing is Impossible
Michael Weiss Video Summary of Partnership With Patients
Erin Gilmer Partnership With Patients
Scott Strange On Feeling Centered and the Unconference
AfternoonNapper The Ethics of Pharma-Patient Relationship 
Corinna West I met the 1000 mile swimmer and Five Things I learned at Partnership with Patients Conference
Alicia Staley Cerner Showcases the Future of Healthcare
Carolyn Capern The Partnership with Patients Summit

Quite a few people wondered at our long hashtag.  I told them to read the blog #Cinderblocks and patient Summits. We trended on twitter for the Kansas City region during the conference.  Our symplur analytics show over 3k in tweets leading to 9 million potential impressions.

We also had an unexpected guest.  On Sunday swimmer Dave Cornthwaite and his support team joined our group as he swam down the lower Missouri to raise awareness and funds for breast cancer.  Thank you to Corinna for introducing us.

Thank you to all of our speakers!

We really packed in a lot of content in very few hours thank you to all of our veteran and novice speaker that made that possible.  Cerner will post these videos in the months to come and I will link to them here.

Our Partner Speakers:
Ryan Neuhofel, Tobias Gilk, Anne Becker-Schutte, Joe Ketcherside, Josh Rubin, Doug Weinbrenner, Katherine Cartwright Knodel, Jim Hansen, Roy Foster, Olga Pierce, Michael Millenson, Lesa Mitchell,  Susan Hull, Bunny Ellerin, Brian Carter

Our Patient Speakers:

Thank you Lisa Fields, Bart Windrum, Joleen Chambers, Tiffany Peterson, Kait B. Roe, Eunita Winkey, Amanda Greene, Carolyn Capern, Jari Holland Buck, Pat Mastors, Erin Gilmer, Casey Quinlan Michael Weiss, Dave de Bronkart, Evelyn McKnight

 “Was it a success? Was Partnership With Patients in Kansas City Sept 21-23, 2012 all that you had hoped it would be?"

How do you answer that?  Maybe the answer is an economic one, "Yes! We raised the money needed to fund it and found a venue to host us."  Perhaps answer is and organizational one, "Yes! Patients and Partners flew from all over the nation and locals gave up their weekend to attend this event in Kansas City."  Or should we answer in another way? "This event was a moment to recharge the soul and renew the will to fight for others."

Maybe success was having the event in the first place.  Maybe success is the willingness to try even if we fail.

At this event I was a moderator and an organizer.  I did not deliver a keynote speech; I left that to the many other attendees.  I did deliver some closing remarks.

I spoke to crowd about the day, July 21st, 2007, I stood upon the sales counter at the toy store Barstons Child’s Play.  It was 11:45 at night and I was cloaked in a witches robe.  I was performing a dramatic interpretation of  J.K. Rowling’s Harry Potter and the Half-Blood Prince, the sixth installment in the series.  As I performed the dialog between Professors Snape and Dumbledore, I looked into the glittering eyes of the hundred plus customers who crowded every isle of our store.  Then it was midnight, my performance ended, and the crowd grabbed the new book: Harry Potter and the Deathly Hallows.

My husband Fred and I read Harry Potter and the Deathly Hallows very rapidly, mostly reading for plot.  Years later after Fred’s death, I would read it again.  It dealt so well with immense journey one undertakes after the death of a loved one.   I suppose that is very understandable as J.K Rowling based a lot of Harry’s journey on her own experience with grief after her mother’s death in 1990.  I told those assembled that one line from the book spoke deeply to me in my grief.

"I open at the close."

I told them this line was such a powerful one.  This is the moment that Harry embraces the greatest failure life has to offer: to die.  This is the moment we go on no matter our fate; we will strive, we will try to help others even if our own success is forfeit.  In this moment we accept that we can fail, and thereby create an opportunity to vanquish our foe.  

That is the close I gave those brave partners and patients who met in Kansas City.

I open at the close; or in this end, exists a new beginning.

The Million Puppet March

I love people who will not abide injustice.

I honor those brave regular folks who jump up and demand action even if they have no funding or safety net.

I especially relate if they have gone through their own personal hell, yet still stand up for others.

I found such a person in Chris Meecham. He is a student who lives in Idaho.  When he heard recent remarks during the presidential debate that a candidate was considering defunding public broadcasting, he decided he must do something.  Then he did a very scary thing; he spoke about politics on his blog and began to organize The Million Puppet March in DC on November 3rd to support continued funding for Public Broadcasting.

Michael Bellavia an animation executive was in Los Angeles and thinking the same kind of thoughts.  Originally the event was entitled The Million Muppet March, but in a desire to be inclusive they renamed it the Million Puppet March. They joined forces and created a website and a Facebook page and a Twitter account.  Then they worked on getting permits to host an event across the country in DC.  Which is not for the faint of heart.

Now they need your help with fundraising.  They created a crowd-funding account on indiegogo.  They need to raise at least 10k in the next week to fund the minimum permitting costs.  Please donate. Even a small amount will help.

Chris and Michael are really sticking their necks out.  They have entered the political fray in the name of all that is PBS. I have done this in the world of patient rights.  I know how mean the comments field can get when you stand up for the down trodden.  So I firmly support this attempt to fight back with laughter, puppets and marching.


I will march with them, for I too have puppets.  They are Henson-style Muppets focused on Blue Button and Patient Rights.  We very much appreciate the amazing health education that has been provided by public broadcasting, from hygiene lessons on Sesame Street to explaining hospice on Frontline.  I am glad to join forces with Chris, Michael and the 600 other puppeteers who plan to attend.

And in case you have not seen it, this was the way my late husband Fred said goodbye to his sons in hospice a few weeks before he died. 

He did it with puppets.

Please donate to the cause.  I hope to see you there I have a lot of puppets to share.  Let me know if you can march with us.

Join Us 11/3/2012 10am ET in Washington DC in Lincoln Park. 11am March to Capitol Reflecting Pool for 1pm ET Rally. 2pm ET Global Tweet: "I support continued public funding of public media. #MPM2012"

Saturday, October 27, 2012

Trapped Energy at #PCORI

I spent most of Saturday October 27th at PCORI- Patient-Centered Outcomes Research Institute meeting Transforming Patient-Centered Research: Building Partnerships and Promising Models.  It was the first conference day.

I arrived a few minutes late because it was the earliest I could find a sitter on a Saturday with short notice.  A week before I did not think I would be attending this meeting.

I first heard about the goals of PCORI from Sue Sheridan in May 2012.  Do you know Sue?  She is a kind beautiful woman who is an advocate due to two medical errors.  Her husband Pat died in 2002 after a radiology report that described cancer was not communicated to his care team.  Their son, Cal, born in 1995 suffered brain damage due to neonatal jaundice.   She has suffered so, yet she strives to help others.  Many of us in the patient advocacy community rejoiced that such a dedicated advocate was selected to be Director of Patient Engagement at PCORI.

Sue called me because she was helping plan a PCORI meeting on data in July.  In early May she asked me to submit a bio to be considered as an attendee of this meeting focusing on data.   At the end of the month she let me know I wasn’t a good match for this meeting as I focused on patient records and this meeting would be about HIT. 

I wondered a bit at that.  HIT is sorta my thing, but I shrugged my shoulders and went on with plans to create a Partnership with Patients Summit in September.  I got a few form emails from Sue after that and in one she encouraged all recipients to request to attend the meeting in October.  I also got a letter from Helen Haskell with the same request.  So I submitted a request to attend.  On October 9th, I got an email that said:

“Thank you very much for your interest in attending the PCORI workshop Transforming Patient-Centered Research: Building Partnerships and Promising Models, October 26-28, in Washington, D.C. We received more than 350 statements of interest and were overwhelmed by the commitment and passion expressed by our patients, caregivers and other stakeholders.

Due to limited event space and high demand, we unfortunately are unable to invite you to attend the workshop in person.  You are important to us and we want to capture your ideas and energy as we build PCORI’s patient engagement initiative.  We will provide a webcast for the workshop and opportunities for you to provide feedback on the workshop’s six breakout session topics. Details will be distributed before the workshop, so be on the lookout for another email from us in the near future.”

I recently learned one of my friends and fellow advocates Joleen Chambers got a similar response.

So, I thought that was that.  But on Monday I received an email from Sue that there was a mistake that I had not been invited, and even though it was late notice they would like me to attend.  So the mad scrabble to find a sitter began just as I was preparing to fly to Korea to present.  By Friday I found a sitter.

At 8:45 on Saturday I found myself wheeling art supplies into the grand ballroom of the Renaissance Hotel.  I set up my easel and began to paint the rest of the day. I would finish it at home this evening.

“Trapped Energy.”

"Trapped Energy"

When I finished this painting and was taking a picture my six-year-old Isaac came over to look at it. He said, "What is the goal of this maze? To get all the money before the time runs out?" I thought about all the discussion I heard today and said, "Yes, Isaac that is pretty much it.”

My impressions of PCORI meeting day 1

Research FUNDING

My prior experience with patient partnering in research was had through participating in The Learning Health System Summit.  That is a group consisting of of public and private enterprise creating opportunities to share data sets and research.   I wish we had a transcription of that event.  I would feed it into a word cloud generator.  I bet we would see the word share looming large.  At the PCORI meeting I heard the words funding and incentives about as often as in a Meaningful Use meeting at an EMR conference.


I was initially dismayed that there was no WIFI at this venue, but was delighted when the staff had it turned on so attendees could tweet.  This event was live-streamed in the morning.  There was quite a lively twitter stream, with the majority of the tweets coming from individuals not in attendance.  I grew concerned when I realized the individual tweeting for PCORI was not answering questions on the stream.  I went to Sue and asked her the questions and tweeted out the answers. 

Workshops in lecture style

In the afternoon we were put in numbered groups to attend workshop sessions.  I was in group number 5.  Lori Frank from PCORI facilitated our first session.   She stood in front of the group and called on us if we raised our hands.  She wrote our suggestions in small print on a large paper-covered board. When it came time to discuss the topics she had to say them out load since we could not read such small print.  

Small writing

Sessions were less than an hour and then we would move to the next room.  Each time I moved I had to break down my easel and gear. Soon group 5 left me behind and I just stayed in the same room for the session.  Eric Meade from the Institute for Alternative Futures facilitated this session.  Eric discouraged talking among attendees. When I and another attendee began discussing our concerns that so few people applied to attend the PCORI meeting and many of those turned away, we were talked over by Eric and he called on another attendee.  He also wrote very small on the board.

In the next session I stayed. I tried not to comment too much, but when another attendee mentioned the board was unreadable.  I asked why couldn’t he write larger?  There was a note taker in the room for his benefit. Wasn’t the board for us?  He said it had to be this way and he had his reasons.

And that is when I packed up my easel and left the meeting.  I had had enough.  I was tired of being a mouse in a maze.  I was tired of being led from room to room.  I was tired of hearing about the importance of being funded and the short time table to get those funds.

In the maze

We were supposed to answer two questions on this conference day:

1.How can PCORI best measure the effectiveness of patient and stakeholder engagement in research?

2.What novel methods can patients and patient advocates propose for evaluation of research engagement that would capitalize on the growing networks of patients engaged in research?

I want to focus on that second question and the word novel.

Novel:  of a kind not seen before; fresh; new; original

I wanted to hear this group speak about the Quanified Self-movement, yet I met attendees who had never heard of Patients Like Me before today. If you look at this painting here is the hope.  This patient hand reach up out of the maze beyond and above the enclosing walls.  Here is the patient in the center able to see a new horizon, reaching toward the cloud informing a greater crowd of the greatness that is coming. 

Patients Like Me

I want to see one aspect of PCORI engagement determined by a robust SYMPLUR report or perhaps a good Klout Score.

I want to see the folks talking about disparity without equating internet access and affluence. Mobile is the great equalizer.

I want to see a thriving PCORI group on Facebook, because although Sue is great patient advocate she cannot do this on her own. We need to support the mission in an open and transparent fashion.

I want to see an unconference at PCORI.  I want to see all these wonderful bright people determine the agenda themselves.

I want to see an equal number of providers, patients and researchers in the same room taking with each other.  We will never have value in the eyes of the medical establishment if you keep having separate meetings.  Separate is not equal.

I want to see these novel things, so I can paint a different picture.  

Update October 31, 2012

It has been a few days since posting this.  Since then I have introduced Sue to Josh Rubin from the Learning Health System and MarkScrimshire from HealthCamp as he specializes in Health conferences.  Sue was happy to hear of their work.

Kelly Young also posted a blog about this conference: Creating a Culture for Patient Centered Research.

A few attendees have reached out to me saying they felt welcomed and appreciated, and that is important to acknowledge.  

In the comments field below Kelly stated my concerns better than I did in this post when she said."My concern is that PCORI will have novel goals, but then attempt to accomplish them using the same old ways of doing business. Internally, they need to consider what kind of relationship they want to have with this community that they say they want to build. Then, they need to nurture that relationship and learn from it. While this may require changing some specifics, like writing larger on the board or training someone to reply to Tweets, it is more about establishing relationships that model the kind of of respectful, democratic communication that PCORI hopes will take place within each of its research teams.

Sunday, October 7, 2012

Be Opened

I have a favorite word.  I heard it in a sermon over 20 years ago.  I even used this word as the title of my dear friend Kait B. Roe’s Walking Gallery jacket.

The word is Ephphatha

This is word that Jesus used as he healed a man who was deaf and mute.  The word means, “Be opened.”  Immediately upon being healed the man who once suffered greatly in his ability to communicate, began to exclaim and the crowd responded in kind.

This past week was a great one for the word Ephphatha, as the results of the OpenNotes project (primarily funded by the Robert Woods Johnson Foundation Pioneer Portfolio) was published in the October issue of the Annuals of Internal Medicine.


It was a great week for patients too.   I have been testifying these past 3 years about the importance of open data access for patients.  Much has been done to improve electronic medical record access in these past three years.  Meaningful Use stage one  specified that patients should be able to see imaging results, labs, vitals and after-discharge summaries.  The Blue Button download, currently in use by the VA, Medicare and Tricare, also enabled access to this information and a bit more.

But I testify that patients need complete data access and that means we should be able to see medical reconciliation reports, nurse’s progress notes and doctor’s progress notes.  I have said so vehemently and frequently in person and online.

I especially commented on the concept of open notes Twitter.

In June of 2010, I was part of a conversation thread on this topic.  While I was tweeting advocacy for complete access Steve Downs with RWJF joined the thread and told us to watch for the results of the OpenNotes project.  I learned about this project designed to study the ramifications of opening up doctor’s progress notes to patients.  I read about it a great deal in the two years hence.

I am glad to see the claims made by myself and other e-patients that open notes have great value now have scientific support.  In 2010, when we were advocating for open access we were given many reasons for denial. 

Reasons for record access denial vs. reality

We were told patients are not educated enough to understand medical language and would be emotionally damaged by reading the record, yet in the study 90% patients responded they understood what they had read and were not bothered by it.

We were told that if patients could read the record they would pursue more lawsuits against doctors; as of this writing I understand only 1-8% were concerned or offended by the contents of the notes and I have not heard of any report of legal action against the doctors in this study.

We were told patients are too lazy to check their record, yet 87% of those enrolled in this study did check the notes.

We were told that open notes would cause an unbearable increase in the workload for doctors, yet after completing the study doctors said the study either only added a modest increase in work or that it was negligible.

So post study we see so many fears were unfounded, and healing benefits came to light instead.  80% Patients claimed greater adherence to medication protocols due to access to the notes as well as better ability to follow their doctor’s recommendations. 

Which brings me back to Ephphatha.

Be opened.

There is more within this report than dry statistical support of the belief that open communication can improve workflow and outcomes.  This is the moment when the walls of isolation fall down and those patients and caregivers who cried in silence, both deaf and mute, can finally join in greater communion within healthcare.

Here our hearts open and we sing.

There is still much to discuss on this topic.  When will we see access to nurse’s notes?  When will individuals who suffer in the behavioral health system have such access?  When will those patients who have succumbed to drug abuse have access?  Will we find that the reasons for denying such persons access to be as unfounded as the reasons that were once used to deny traditional patients access to notes?


In DC on Thursday, October 11th 9:30- 11:30 there will be a public meeting on OpenNotes that will be live-streamed. I hope to see some of you there as we rejoice and question.  I will be live painting and I think that painting will be entitled “Ephphatha Revisited.”

Great articles on this topic:

Historic Day in Opening Doctor's Notes by Dave Chase, Forbes

Letting Patients Read the Doctor’s Notes by Pauline W. Chen, M.D., The New York Times