Tonight's picture was taken in May of 2005. Mattie was three years old and as you can see he decided to stand on his tractor stool in the middle of the living room. In fact, that weekend, Mattie and Peter built this stool by hand and painted it. Mattie needed a step stool in the bathroom, and instead of buying one already made, Peter encouraged Mattie to work with him and design one together. Mattie loved the whole process and was very proud of their accomplishment. Peter and Mattie both signed their initials to the stool. The stool is priceless to me, and it remains in my clothes closet. I use it whenever I need to reach things on my top shelves. Naturally seeing this stool takes me back to this moment in time.
Quote of the day: As people think and work together, a fabric of shared meaning comes into being. ~ Harrison Owen
Peter and I hosted a strategy session at his office in Arlington, VA today with three researchers and one clinician. The purpose of the three hour session was two fold. The first was to hear from a clinician, Greg Baiocchi, at Penn State Children's Hospital, about the ways the Psychosocial Standards (which were Mattie Miracle's vision) are being utilized to evaluate their pediatric psychosocial program. Second, we were honored to have both Dr. Julia Rowland and Dr. Lynne Padgett in the meeting, as they designed an implementation tool (like a survey) in the adult cancer world. The tool serves as both a checklist of how to objectively meet a standard as well as helps a program rate how well it is meeting the standard. Sound confusing? Let me try to simply what I am trying to describe.
Basically the Psychosocial Standards project is like a cookbook. Picture the 15 Psychosocial Standards as the 15 top recipes in a cookbook. However, no cookbook would ever be bought if all it featured was a title of a recipe. The cookbook needs to provide more details, like a list of ingredients and instructions on how to cook the dish. Using this analogy, our meeting today, focused on the ingredients and instructions necessary to produce the dish. The dish being a psychosocial standard. Creating evidence based Standards was a great starting point (and it took three years to do), but now we have to give clinicians the necessary tools to implement these Standards. So this is how we spent three hours today! When I tell you it flew by, I am not kidding.
In addition, Dr. Lori Wiener, who has been working closely with us since 2012, was in the meeting. I really feel after today that we have a much clearer picture of how to develop guidelines and an assessment tool so programs can rate their capacity to meet a Standard. The Standards are proving to be useful for many reasons. As we are constantly hearing from clinicians that the Standards help to provide validity to their jobs with their hospital administration. In addition, the Standards help to guide the quality of care, as it gives programs a way of assessing the kinds and frequencies of support services offered.
In addition to it being an educational day about the Standards, I also feel I got a better understanding and glimpse into how America works today.
Peter's company moved office space in Arlington. They are now located in a the Artisphere, which in essence is where the old Newseum (a broadcasting museum) used to be located. This whole office concept though is new to me, because several companies share the same space. This is clearly the trend businesses are moving to, to help cut down on overhead, as now multiple companies are sharing these expenses. In any case, this is one of the common work spaces I saw today! To me it looks more like a library or home. It is bright, airy, comfortable, and I am sure when people are in this space..... LOUD! This is how work is being done. No longer are people in offices or cubicles. In fact that is considered passe for corporations. To me it was a fascinating sociological study in the making.
We took Starbuck's orders this morning, and each person had their drink awaiting their arrival. We also provided a catered lunch, as food is vital to keeping the brain and body working.
What you see below (Appendix A) is a portion of the tool designed in the adult cancer world to help assess how a program is meeting a clinical standard. We spent a lot of time going through this and I am happy to report that we applied a similar model to four out of the 15 Psychosocial Standards of Care for children. I think we got the hang of it with the first four, so now we can do the work on the others. Where is the content for this tool we are creating coming from? Directly from the Standards that were published in 2015. The publication is over 200 pages, which is unwieldy. Therefore, these evidence based interventions must be arranged in a simple and user friendly document. Which was the whole purpose for meeting today, to brainstorm HOW TO DO THIS. When I initially looked at the diagram below (which is the adult model) I did not get it. But the more time we spent talking about it and interfacing with its creators today, the more sense it made. With the help of Julia and Lynne, we started to adapt the model below to our Standards.
