Uncategorized

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…

Uncategorized

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…

Uncategorized

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…

Uncategorized

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…