The Patient Panel

For many years patient advocates have worked on greater presence of the patient view in medical conferences both as presenters and attendees.  Some of us have pushed even further and asked to be part of the planning stage and design of events or care systems.  Many of us have fought for years for mere inclusion. 

But the time has come for more than just inclusion.  I have attended far too many events that take a step toward including patients where they give us a panel at some odd point in the day or in a basement side hall.  I have watched rooms, once filled while the provider panel spoke, empty out as the patient panel begins its presentation.  The conference attendees congregate in the hallway drinking coffee and networking while patients speak to half-empty rooms.

Patients’ panels are not just an extra coffee break.

There are people and organizations out there fighting hard for patient inclusion.  One of these organizations is TMIT (Texas Medical Institute of Technology).  They have been working for more than a year on a healthcare documentary for the Discovery Channel called Surfingthe Healthcare Tsunami: Bring Your Best Board!™  They will premiere that documentary on Friday, April 27^th, in Washington, DC.  The documentary will be shown at a private screening at The National Press Club from 8:00am -10:00am that morning.  Then it will be shown that evening from 6:30-8:00pm as a public premiere with attendees who were in the movie, collaborators with TMIT, and limited general admission.

The film will introduce and close a day devoted to the positive role HIT can play in medicine and patient communication.  There will be a patient panel, and it will be integral to the flow of the meeting.  The entire Patient Safety and High Performance Leadership in Health Information Technology Summitwill be live-streamed and the twitter handle is #TMITHIT.

Please save the date. If I do not see you there in person, I look forward to reading your tweets.

Mistakes

I have created art with children in preschool and elementary classrooms for the past ten years. Like many artists before me, I only use permanent paint and markers. Each pencil top ends in a metal ferrule, and where the eraser once resided, now a hole remains. Often parents respond in disbelief, “How can you give little children permanent paint? What if they paint and make an error? Or how do you fix a mistake without an eraser?”

The answer is simple; you can’t. The “mistake” or “error” will be there for the teacher to see and for the student to learn from. Fine art is a lot like medicine. Mistakes will be made that cannot be erased and the results of those mistakes provide valuable lessons. We learn so much from our mistakes. The human mind is wired to respond to negative emotions. We can remember failure with great precision, and apply that memory to our current task.  The memory of failure need not even be our own error: we can apply the lessons of experience that others teach us and create a better outcome in our art and in our life.

In my class, I can often help a child incorporate a mistake into a work of art. I call them “happy accidents.” I tell the child this is an opportunity to create organic change within his piece. I try to redirect a child away from crumpling up his work and walking away. I help him save whatever is left and his “mistake” becomes part of my teaching strategy from that day forward. I am a teacher; if my students make an error, I must own that. I must re-evaluate the method of instruction and determine if this was a system error.

Yes, there are “happy accidents” in art. Sometimes the art is even better for the error that occurred during creation. But in medicine most accidents are not happy ones, and errors can have horrible ramifications. Yet we still can learn from these tragic occurrences, sometimes called “never events.”  The key to using a mistake for greater edification is to embrace the information rather than conceal it.

Not long ago I was perusing videos on the SafetyLeaders.org website and I saw a video interview of Jeanette Ives Erickson, RN, DNP, FAAN. She was talking about mistakes in nursing practice.

I was amazed by one line in her interview. After a nurse makes an error, Dr. Erickson asks her, “Did you commit this error on purpose?”  She said that the nurse is taken aback by such a question. When the nurse says no, then Dr. Erickson responds, “Well, then, it is my fault, because errors stem from system flaws.”

I was so excited to see this clip. So many of my friends who work in patient advocacy do so because someone they loved was hurt or died while in a medical care facility. My fellow advocates speak out every day so others will not have to suffer as they did. The have become living examples of system failure. All they ask is that providers listen to and embrace these advocates’ stories.

Just as in my art class, there is no place for erasers in lessons on medical error. There is only embracing the mistake, doing one’s best to prevent additional harm, and using this as a true “educational opportunity” so others will not have to suffer as we did.

Remembering Your Hollidays

A little over a year ago I met Dr. Chuck Denham, CEO of TMIT  (Texas Medical Institute of Technology) on the stage of the Quality Net 2010 conference in Baltimore.  I had just finished a moving speech about the importance of patient/family access to the electronic medical record.  After I finished speaking, Chuck decided he must meet with me. Before we had even begun the after-speech Q&A, Chuck asked me if I would like to be involved in his massive patient advocacy project with TMIT which is hosted at SafteryLeaders.org.  I said yes, and we announced on stage that we would work together to promote great positive changes in patient safety in 2011.

Soon after that, I met with his film team.  We filmed a short video at the Institute for Healthcare (IHI) in December 2011.  It was entitled Remember Your Hollidays.  The film team of Collin Gabriel and Matthew Listiak edited the video quickly and it was posted on YouTube in late December. 

Throughout the spring I had conversations with Chuck and Laura Slayton, social media guru at TMIT, about the various safety initiatives of TMIT, including a concept called CareMoms at SafetyLeaders.org 

 The focus of CareMoms, as defined by SafetyLeaders, is to engage and develop leaders – who are moms, dads, grandparents, sons, and daughters in the community. These people can bring their power of persuasion to reduce healthcare accidents that cause more than 200,000 deaths in America, and many more globally. These CareMoms/Dads can rally around their local hospitals and give them concepts, tools, and resources that hospital leaders and healthcare governance boards need to "chase zero" accidents and win the war on healthcare harm. 

After discussing this concept with Chuck, I designed his jacket for the Walking Gallery, a patient advocacy movement consisting of wearable art, using an image of a universal and infinite CareMother encircling our world.

Soon Chuck asked me what I would recommend as the greatest thing that TMIT could create to further the work of patient advocacy. I told him a Speakers Bureau for patients.

For the last six months, the TMIT team has been doing exactly that.   

So last week at QualityNet 2011 in Baltimore, I saw Chuck once again upon the stage.  He spoke of the amazing patient safety initiatives on the way, and he encouraged the entire crowd to visit SpeakerLink.org a site where seeking facilities can find health policy speakers with a patient or patient-centric view.  


I tweeted my joy from the back of the room upon seeing our dream become reality. Then the actress and patient advocate Alicia Cole began to speak. She told a powerful story of her brush with death due to a hospital-acquired infection. She spoke in loving terms of her mother and father who stood at her side as steadfast advocates, thereby saving her life. She mentioned how her mother saw a black spot no larger than a dot from a Sharpie marker - a dot that would have grown and killed Alicia in hours without her mother’s intervention.

Alicia is an amazing patient speaker and embodied the reason why we speak.  Her words can change our world. 

Please remember us this Holiday Season.  Remember the Hollidays.  Remember the Alicias. Remember the black dot that was not a speck of coal within a Christmas stocking, but instead a speck of Cole. Remember a mother who saved her child.

Happy Holidays to all the CareMoms, the CareDads and the patients who suffer; we shall be thinking of you.