Tradeshows
Langdon Morris
We're going to be going into three groups.
Team One
Team Two
Team Three
Overview of the September Workshop
Langdon Morris
We're going to get started. We'll share with you some of the findings from the first workshop.
They wanted to come up with an ideal design for California but if we could come up with a sound design for CA it could also be applied elsewhere. We hope to create a design that's valid locally in a hospital, in a county, in a state, and then possibly nationally.
The process we're using is called idealized design. One of the ideas is to clean the slate and think about things from their origins and not just about the way things are right now.
We did some activities around what people in the room have already experienced. The September meeting was to brainstorm and come up with ideas, this meeting is about refining and improving, and then there will be a meeting with the Board next month.
The Foundation can invest about $2m per year on this project so one of our purposes today is to get your input into how you feel those funds could be leveraged and invested.
Gary and his team did ethnographic research with 8 families in Northern California. That research is qualitative research and it intends to evoke an emotional response from the observations. The interviews take place in their homes. You cannot quantify these things. We received some insights from this.
In the creative process we use an inquiry based methodology and we ask questions so the participants can have the right conversations. Part of our process is to figure out the right questions, but if you are in an activity and you feel the questions aren't quite right you should change them.
We'll go through these posters. This is the home page we made from the first workshop. We're creating a web site of this workshop as well.
One of the activities we did in the first workshop was to create a model for us of the current system.
This activity was designed to figure out the complexity of the system. I tried to aggregate all the data from these models. I tried to capture some of the information and things that flow between these different entities.
The process is very complex and very difficult for a family to navigate. It's very challenging to navigate and fulfill the needs of the families.
Another activity we did was to create an inventory of the problems. There are four major areas where there are problems. Fragmentation problems, treatment problems, funding and management problems.
We'd like you to come up and look at this and see if there are any stakeholders or entities that aren't represented here.
The 5 Models of Ethnographic Research
Gary Waymire
We're going to show you five quick models that describe some of the things we've learned that we think are relevant. You can write things on these post-it notes and put them up here as we go.
The Patients Experience Model
The first model is the experience model. What experience are they having in the health care process?
Pre-diagnosis. The patient has a stage we call pre-diagnosis. They don't understand the 'rule out' model of medicine. They don't understand why things take so long. There is a success model some families use in this phase - we called that listening to their instincts. Some families do better in this area than others do.
Diagnosis. The second stage is diagnosis. They are now in the system and there is a fire hose of information coming at them. It's hard to keep up with everything that's happening. That's crisis mode.
Re-entry. The next one is re-entry - coming off the crisis. You lose your safety net when you leave the hospital and you are all alone. There is a lot of concern here.
New Normal. Then there is the new normal. You are trying to integrate the medical issues and the every day things. There are issues with things like compliance. There is denial in here. The coping mechanism that works best is networking. Finding and forming relationships and the people that do that are quite successful. Those that don't do that suffer. These are not cases where you want to do this alone.
Transition. The last phase is transition. There are some families that begin to realize there are other things like peer pressure that start to come into play. Will there be a job? There are really no resources in California for out here. The families that are successful out here are the ones that anticipate these things before they happen.
One thing to add is this isn't really always linear and you can loop back and experience crisis at any time.
The way you will experience the system varies depending on where you are located.
The Resource Model
Families have a pretty consistent view of the resources available to them. They see themselves in the middle. They see everything through the lens of the disease. The one thing that was interesting in one of the families we interviewed was the oncologist was the go-to person for everything for this family.
There is a horizon out there. There is only so far you can see and there are a lot of resources in the system that they can't see. There are people that play the role of a coordinator. The successful people latch on to these and use them.
If you don't get a coordinator you struggle to see the bigger picture of resources out there. Patients and families don't know to go look for the resources they need but if it shows up they know they are there.
Once you leave the hospital social workers stop servicing you.
CCS pays for a coordinator in some cases.
What we've found is some coordinators help people see beyond their horizons.
Are we going to take transition seriously? Are we going to take the medical home seriously?
What does that entity do - the primary care physician? That has to be figured out!
If you have to go through a referral process you want to get to the end of the line fast. You might want to take a short cut. Some people might see PCPs as a road block.
If you have a good pediatrician it should speed up the process.
System Friction Model
The more acute the disease the easier it is to get service to treat it. The less acute the service was the harder it was to get. The pattern we see is the less acute things are more in control of the payers and the more acute things are in the control of the medical team. Your insurance company takes an active role in some of these things. It was interesting to us that the less acute things had more friction than the more acute things.
It probably mirrors our overall healthcare system.
Interaction Model
Our families have different styles interacting with the system. There were some that were incapacitated - and very vulnerable.
We saw a group that were compliant. This group struggles because they don't try to branch out and only do what's presented to them.
There are a group that are advocates and they are networkers. They learn that they can get things done if they network.
There is a group that becomes activists and go beyond their own families. The activist can help the vulnerable.
The downside we see to all this is the squeaky wheel response. We might spend more resources on the more vocal points in this model and they are the less needy.
This is a term to define the relationships. Are the vulnerable less compliant? Maybe accidentally but possibly because they aren't connected in.
The compliant thing might be more culturally oriented? The Asian family didn't ask questions.
Could you move families through some coaching and move them up this graph and make them more advocates for themselves? Like a buddy system.
The Hope Model
The last model is the Hope model. Hope is what keeps people going through all of this. We've found the overriding emotion that seems to matter is hope. Hope fuels people to do things - to move forward and get the job done. Hope varies in each family. There are a lot of things that contribute to hope. We are also part of that too - we can make hope happen or not.
The Ideal System Model
David Alexander
In some ways this is the most dense of all the materials, but most of the day will be spent on this. You saw about the work we did on the current system and this is our attempt to represent the current system visually.
We wanted a graphic representation of where we are now and another one of where we want to go.
During the session in September we had people attempt to draw the current system. We've tried to consolidate all 8 of the descriptions into this graphic.
The current system provides children with very variable access to medical home services of very varying quality.
The providers are spread out across a lot of agencies, and there is fragmentation of services.
One of the comments is that no one pays for the arrows - the linkages between the family and the services they need.
You get highly variable services depending on where you live, your income, your insurance, and your condition.
From the payment point of view there is huge fragmentation of the system. There can be funding for your care coming from all sorts of places. That's difficult for families.
The publicly funded portion of the system is under funded – that is, the public system doesn’t cover the cost of care. The deficit in payment is in effect being subsidized by the existing employer based private insurance system.
The other thing is that some payers have eligible conditions overlapping. The regional centers cover epilepsy and cerebral palsy. A child may be eligible in both systems for some care.
This is an attempt to capture where we are. We have to say that it's under funded for the near future.
How much is spent trying to make these connections? The amount of time some of these providers spend trying to figure out who to bill has some opportunities for improvement.
Should the patient and family be in the middle like other models? You're trying to describe the existing system and that is more like it now.
The second exercise in September was to come up with guiding principles. This tries to capture that. We have added three things this morning already.
What is proper care? What we talked about was children receiving the care they need to optimize their outcomes.
What CCS tried to do was to get the most appropriate provider at the most appropriate time. CCS has established standards and that's helped all of California.
This is the straw man we're going to work on today. From the last presentations we've already received feedback.
There should be a more central, and consistent role for the medical home - a consistently defined medical home and a consistent set of services they provide. A consistent set of guiding principles for children to get the services they need.
We have to figure out whether there are qualifying conditions and if you fall into this group you fall into a system that covers all care for children and there is a single source of payment (not necessarily a single payer but it could be). This single payer could be funded by several sources. This is for the whole care of the child.
This would expand beyond CCS to all California's children.
The thing we are struggling with is the qualifying conditions. There are children with asthma that don't need this and some that do. There is some set of qualifiers that get you into this. It's a single system of care for all children.
When you say a single source of payment is that separate?
One of the question marks is how do you define whole child? Is it a medical condition or does it include psychological services too?
Are we going to fold CCS back into this kind of thing to get them to serve all children?
In this model there might be a new organization that might run this population. A new non-profit could be funded by a premium from Kaiser that goes to pay for the care of those kids.
A managed care plan that is organized around the needs of this population could serve them better.
