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Monday, June 14, 2010

A matter of perspective

On Monday, June 7, I had the pleasure of attending the "Health 2.0 Goes to Washington" conference. It was a meeting of great minds. Attendees came from all over the United States and included representatives from the government, medicine and information technology. In this heady mix of professions, patient advocates were liberally sprinkled. I was so excited to see that every panel had a patient representative. This was such a change. At this point I have attended quite a few medical conferences. I have never seen such an amazing selection of patient speakers.

I also noticed this conference differed in other ways. I was intrigued by the all the people standing along the sidelines watching the speeches. There were plenty of seats available. These were nice upholstered theatre-style seats. Yet people were standing or lounging on stair steps. I looked around. Were they attempting to play hooky? Were they standing up in order to more easily join in a hallway conversation? I looked out in the hallway. Nope, no one was goofing off or socializing. I sat down myself, only to stand 15 minutes later. I joined the standing ones. I was so filled with energy and excitement that I could not sit. I could not be contained like that. I looked among those standing. I noticed a lot of techies and early adapters. I saw a group of people who might have been termed ADHD. I saw people who would not sit still. Thank God for these people who refuse to sit still. They refuse to wait for incremental change in our medical system. Thank God for sites such as Jamie Heywood’s Patients Like Me or Trisha Torrey and her blog Every Patient’s Advocate. Thank God for David Hale at NIH working on the Pillbox program that will enable the rapid classification pills by appearance alone. These amazing people were willing to stand up and create positive change within the system. To outsiders the standing ones may have seemed foolish. After all, there were plenty of chairs. Foolish or genius: it is just a matter of perspective. Sometimes you just can’t sit still and wait for change.

Looking back, I have always had a hard time sitting still.

As a child I would sit beside my mother in Church and draw on my children's bulletin in order to channel my energy in a positive direction. I know it is important to pay attention in church, but I thought God would not mind if I drew pictures from the Bible. Even though my mother often wondered why I couldn’t keep quiet like my little sister, she treasured these Church drawings. She still keeps some of them in her hope chest.

Five years ago my son Freddie took up my habit of drawing in church. During one service I looked down to see a peculiar picture on his drawing pad. The picture consisted of a series of small houses lined up along the bottom of the paper. Above the houses stood stick people and fish in the sky. Along the very top of the page was an elongated oval. I was stumped trying to figure out the meaning of this rendering. In my best church whisper I asked, “What are you drawing?” He looked at me as though I was being particularly dull and said, “Noah’s ark…from below.”

In my years of teaching art I have seen many versions of Noah’s ark. But for the most part each picture contains a boat and animals and a sunny blue sky. I never saw a picture of what lies beneath until Freddie’s drawing. I guess it is just a matter of perspective. Both images are equally valid and each focuses on a different part of the story.

In health care, I think we are often blue sky focused. Do a Google image search on patients. You will be amazed at all the smiling patients in full make-up. Where are the desperately sick or ill? Where are the dying ones? I am so happy that at the Health 2.0 conference we got to hear so many different perspectives. I am very happy that Trisha Torrey asked about the government acronyms that were being rained down upon us. She pointed out that being flooded with data did not help if you couldn’t understand. I am very thankful that we got to see the slide show from Jonathan Kuniholm and the Open Prosthetics Project that compared the technology growth of the telephone to that of the prosthetic arm. If the growth curve had remained the same we would still be using the rotary dial.

I am very thankful that Health 2.0 was a conference filled with so many different perspectives. I am very thankful that Mathew Holt invited me to speak about the patient’s perspective on the EHR. I am honored that Gilles Frydman asked me to present on the Patients 2.0 panel. Such divergent thoughts opened so many windows of opportunity. I am glad there were so many speakers who challenged us to take action. I know I for one, won’t take that challenge sitting still.


  1. Regina, your enthusiasm is infectious. Keep up the good work. In loving memory of your husband, and through your work, he is living on and affecting more people than you will every know. Finally, the government is acknowledging the existence of the "patient."
    Sheryl Kurland/Patient Advocates Of Orlando

  2. 只有尋常才幹,但具有不尋常恆心的人,一切皆可獲取 ..................................................