Introduction
Langdon Morris
There are a few people that haven't arrived yet. I'm Langdon Morris and I'm one of the facilitators. I think we'll have a good day in here. David will say a few words.
David Alexander
Welcome. Thank you for coming! I'm David Alexander and I will say a few things that some of you may have heard before. We're a foundation that's based in Palo Alto. We were established in 1997 and came out of the Packard Children's Hospital. In the 90s it became part of the University and the Board established the Foundation at the time they gifted the hospital to the university. We serve as the fund raiser for all the funding for the pediatric programs at Stanford.
We also manage an endowment created when we were started. We use that for other programs for children. When we first started we were very locally focused. One of our major focuses was to provide health information about children. We did that in a site called kidsdata.org. We're expanding that now.
In around 2000 we started making grants to other organizations doing good things for children. There were two grant making focuses – child abuse prevention in young children, and supporting the emotional and behavioral health of preteens. We looked at that in a planning process several years ago. We're a small foundation and there are a lot of ways to spend our money wisely. We're trying to figure out where we can have a broad impact.
We are interested in better aligning our grant making with the interests of Packard Children’s Hospital and Stanford.
We have decided to focus on improving the system of care for children with special health care needs. These are the same children who make up the majority of the patients seen at Packard Children’s hospital, and other children’s hospitals across the country. These children receive excellent care during their acute illness, but once they are discharged, the rest of the system doesn’t always serve them well.
We started a process this year to move into this area. We started some research and commissioned a white paper by several people in this room. The white paper described the system of care that exists currently in California.
We contracted with AmCHIP to describe best practices in systems across the country.
We contracted with Christie Bethell to perform more detailed analysis of the already existing sets of data about California in the Nations Children’s Survey, and the National Survey of Children with Special Health Care Needs to produce a robust picture of how the children in California are fairing. We'll have that available soon.
We also contracted with the CDC to add additional questions related to immigration status and access to technology to the survey on Children with special health care needs that is currently in the field. This is our first experience dealing with the Federal Bureaucracy.
The other part of our work this year was to develop a model of an idealized system of care for these children. The idealized model idea is one we have been working towards. We've been working with InnovationLabs for a few months.
What we want out of today is to continue a process we started a few weeks ago. We brought a large group of people representing the continuum of processes involved with this population. In that session we had some primary care docs and specialty care docs and some young people that had some special needs.
We're going to refine some of the work that group did. The goals of this meeting are to refine a model that came out of an idealized delivery system. We want to poke some holes in it.
If we come to some consensus we want to see what it would take to realize this design - get more specific and have a roadmap of what it would take to get to this ideal system.
Primary care and medical home fits into the things we should talk about.
Q: What's the population we're aiming at? The title of this says children with special needs. It could be 20% of all children but the people you described at Packard is 2-3% of all children.
A: We have grant making and information programs. For the purposes of information programs we're talking about the broader definition. When we talk about grant making we're probably talking about the more complicated population. We're going to use both definitions for different purposes.
Langdon
I want to mention a few things about our process. Design is the process we're going through. We're not trying to get people to agree with something we already have figured out. So it's open ended.
The other thing is we're not looking for consensus per se. If there is general disagreement about something we want to know about that because that's possibly where the innovation and discovery is. We want to know why we disagree. Behind disagreements there are different assumptions.
We won't schedule a formal break. If you can time your needs depending on what we're doing that would be great. The bathrooms are right outside this room. We'll have a working lunch.
In the design of the program we wanted about half the people to be new people and half to be from the previous workshop. We're a little heavily weighted on the former participants right now because of the weather.
The next activity we're going to do involves three trade show areas. We'll have you go to each one for about 15 minutes in each area to remind you about what we discussed at the previous workshop. After that we'll do some activities in small groups.
David
This is to reengage people - we've taken the work that was done in that workshop and moved it forward. You will see some refinements to what you did so we need your feedback.
One trade show is work we've done on how the existing system works.
One trade show is ethnography. Part of what we did is hire Point Forward to do some ethnographic research. It's a way to understand how a people in a culture use a product. We wanted them to help us understand how children and their families experience care. They met with families that aren't representative of all families but of some that are connected to the system. We had a good array of folks. What they have provided for us is a new way to visualize how families experience care.
This third station is the straw man of the new model - the idealized system.
Langdon
Let's go around and introduce ourselves. [introductions]
As you've heard this is an amazing group of people. We're excited to see and hear what you think about the work we're doing. You can help us improve the models by using these post-it notes to improve things.
We already modeled good post-it behavior by adding a few to this poster.
We want to have these next conversations be in small groups to enable more interaction. We could do three sequential presentations in a large group but in small groups we can have more interaction and conversation.
