Error 404 in the Patient Advocacy Community

Three years ago, I began to live my life as a patient rights advocate.  I painted a visualization of my husband Fred’s medical record as he lay in hospice.  It was called the Medical Facts Mural.  The painting consists of an anatomy drawing of Fred’s physical status combined with data from his medical record.  It is painted on the wall of a deli and thousands of people have seen it in this span of years.

 


Just paint upon wall, every day it advocates for patients.

Three years ago, I wrote through tears after the burial of my husband.  I wrote about him and all the patients like him. I said simply, "I didn’t ask for this cup; I will drink from it, though.  I will let the anguish of us all pour through me.  I will be his voice.  I will be your voice.  We are all patients in the end.  We should have the right to be treated with dignity and respect... I will stand up.  I will not be silent.  I will not give up the fight."

These words still define my mission three years later. I have never given up.  In the years hence, I have traveled throughout the country representing the patient voice within HIT (Health Information Technology).  I speak about it, paint about it and write about it.     

I will not be silent.

Every post I have ever written still testifies for patients throughout this great nation.  I have never removed a post.

Sadly, this is not the case for all patient advocates.  Some advocates who work for organizations have not been able to testify as freely.  Some have been told not to speak, some have been told not to tweet and some have been told to remove posts that represent the outrage that patients express when they have been denied access to their data.

My heart breaks for advocates like these, who in order to retain employment must bow their heads and shut their mouths within the halls of medicine.  These advocates are torn between telling the truth and protecting the reputation of their organization.  When you listen for their voice, it is silent. When you search for their blog post, you will see error 404: Page not found.

 


Recently there was an announcement for an opportunity for an advocate to assume an unpaid position as a patient or consumer representative in HIT policy discussions. 


GOVERNMENT ACCOUNTABILITY OFFICE (GAO) has a Health Information Technology Policy Committee Vacancy.

 See below:

ACTION: Notice on letters of nomination to fill vacancy.

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SUMMARY: The American Recovery and Reinvestment Act of 2009 (ARRA)
established the Health Information Technology Policy Committee (Health
IT Policy Committee) and gave the Comptroller General responsibility
for appointing 13 of its 20 members. ARRA requires that 3 members be
advocates for patients or consumers. Due to a vacancy on the Committee,
GAO is accepting nominations of individuals to fill one of these three
positions. For this appointment I am announcing the following: Letters
of nomination and resumes should be submitted between May 5 and 25,
2012 to ensure adequate opportunity for review and consideration of
nominees.

FOR FURTHER INFORMATION CONTACT: GAO: Office of Public Affairs, (202)
512-4800. 42 U.S.C. 300jj-12.

I am asking all those who read this blog to nominate me for this position.  I exist within this space as a database of stories.  I tell the story of my husband and my sons.  I speak from my patient center and with the additional resource of the hundreds of stories that populate The Walking Gallery of Healthcare.

I represent no view other than the patient view itself, as told through story and data combined.  As we create a new model of payment within medicine based on outcomes rather than fee for service, story as perceived by patients will have a vital role in quality measurement.  Total Performance Score within Value Based Purchasing utilizes an alignment of both Clinical Process Domain and Patient Experience Domain.

Patient Experience Domain is the narrative of an episode of care from the patient view.  Health Information Technology provides an opportunity to create a “book” of care authored by many.  The patient view must be represented as we design this new model of participatory care.

I am not a non-profit nor do I represent a foundation.  I am just a regular person, and like many patients in this nation do not have a degree, let alone a terminal one.  I lived most of my life uninsured and lived in poverty and know well the strain of these conditions as we talk about health policy. 

I represent those who have no voice at this great table. Those who meet here  will transform the patient’s experience for generations to come.

My primary income is as a speaker and I speak for the living and the dead.  I am paid enough in this role to support two children and myself in a modest life.  I founded an advocacy movement called the Walking Gallery.  There is no fee to join and all the members walk around the world sharing their patient stories.

In the past, patient advocates were chosen from large advocacy organizations who provided a spokesperson that represented hundreds of members.  In a new world filled with the tools of social media we can create similar structures without the need for a formal organization.  I collaborate with a loose confederation of individuals from all levels of society working toward the common cause of truly patient, and family, centered care.

Please write a letter of nomination for me before May 25^th.  I will promise you I will always speak from a patient view within the HIT policy discussions. 

I will stand up.  I will not be silent.  I will not give up the fight.


ADDRESSES:
GAO: HITCommittee@gao.gov.
GAO: 441 G Street NW., Washington, DC 20548.


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Since posting this a few people have requested letter examples.  Here are a few within blog posts.  


Keith Boone "Who Should Represent Patients?"  


Andy Oram "Health Information Technology: Putting the patient back into healthcare"
 
Ted Eytan's "Taking Care of Business at #HealthFoo , Nomination Letter, Regina Holliday, HealthIT policy committee"