Gary Waymire from Point Forward
I'll share some models and some reality with you. There are some really good stories here and we've also tried to model it up a little and make some generalizations.
Do you know the word ethnography? Ethnography is the study of people and culture and it's the field work of anthropology. It started with the Dutch when they were colonizing the world. We have anthropologists and sociologists in our group at Point Forward.
It's a little more than field work. We go into the field and interview people and spend time with them but it's also a methodology. We talk about a lot of things. We believe our job is to represent what it's like to be a patient or a family with special needs - within the realistic world of time, and other parameters, etc.
We studied 8 families. We spent about half a day with each. It's very qualitative work. We're studying culture. It's complex and that means our point of view comes into this. We're studying things as diverse as knowledge, morals, art, law, custom, and other capabilities.
The basis is observation. It's about hanging out and talking to people and getting into what they do and who they are.
As part of this framework we're very open and curious and non-judgmental. It's simply to understand the people we're observing. We love details. We ask why a lot. Listening skills are very important. We listen to language a lot. We want to know why people use the words they do. If we understand the words we can understand the meanings. We look for inconsistencies and gaps.
This is not new. It's detective work and a lot of institutions are using it to help them figure out what they want to do - product development, innovation, etc.
These are our respondents. They are of different ages and from different hospitals. We picked a range of insurances and different ethnic groups. We covered a fairly diverse set and several of them were non-english speaking.
We covered several counties as well. Some people were far from a hospital.
Most of these people have complex issues.
There are a couple of things that make them non-representative of the rest of the system. These people are already in the system and engaged at different levels. Through some of our recruiting you can see we have a broad range of advocacy.
We used the term mental model and how they see themselves interacting with the system. We talked about the future and their expectations. Throughout all of this we focused on emotions.
"Customers buy holes and not drills."
There are two models represented here. One is the customer's and one is the manufacturer. If you can get out of your model it opens up possibilities. The goal that we have sometimes is to step out of our frame and understand another frame.
Our definition of a model is: a shortcut to interpreting something complex.
We're not always cognizant of the model we are in and what we're communicating. Models can create new ideas. If they don't we throw them away.
Here is some work we've done in the past. We did a project with InnovationLabs for the AMA. We modeled the way that different people dealt with their disease. There are different patterns for how people manage significant changes in their lives.
If you are trying to communicate with these different people it's challenging because they all process information differently.
This is some work we did many years ago. We worked with Kimberly Clark and their models showed up in their products and their advertising. They now make more than a billion dollars with huggies.
It's about stages of development and how parents think. We talked to parents and discovered what they wanted for their children.
Stages of Experience Model
Here's some models from the research we've done on this project and then we'll show the video tape. The first model is called the stages of experience. In all of our parents we saw that they went through stages.
The first stage is pre-diagnosis. During pre-diagnosis they have certain feelings. They feel like they have to push for more.
Crisis is the next stage. The approach is to adopt tunnel vision. Information comes fast and furious. They have to make decisions. This is especially hard for non-english speakers.
Reentry is the point where you leave the crisis and abruptly transition to no care.
Then we have something called the new normal. How do we integrate medical care into every day activities. There is a risk of complacency. It's harder to find and get the services and resources you need.
Prep for transition. Peer pressure and independence and other things start to become an issue.
Then there is the wall - where you fall off of child services.
That's the stages of experience model.
Resources Access Model
This is the resources access model. If you are architects and you are looking over this whole thing it's very complex.
These families have a radial model. They have a base. The base is themselves and their specialist. Someone that isn't in this (typically) is the primary care physician. This becomes their base.
They have a horizon and they can only see so far.
Beyond that they don't know and can't see. They have no connection to it unless they have a coordinator or a social worker. That person or persons becomes the person that connects them to the horizon and beyond the horizon. Not every family has this and if you don't have this you are really lost.
It doesn't seem so complex to these patients. They only see what they see.
These are the families.
I'm going to introduce the next activity and then you will see about 20 minutes of video. In your breakout you will work with two of the stories. We want you to pay particular attention because you will work with these in the next round of work.
We're developing a detailed web site. None of this information will be on the web site to protect the confidentiality of the families.
You're slide showed one private insurance and two kids with Healthy Families. I didn't see those kids fly by and I'm curious.
The two private insurance were Kaiser and the last one. Most everyone else was CCS and medi-cal. The two from San Francisco get Healthy Families on top of that.
This is partly important to understand what plans they are enrolled in.
For the non-Californians CCS is part of the way Title 5 is put into practice in California. If you are a child with chronic renal failure your renal care is funded through CCS but the rest is funded another way.
CCS is the largest payer for specialty needs for very poor kids.
75% are CCS and medi-cal. The other 25% are other payers, Healthy Families and private insurers.
CCS is an important adjunct for coverage of a group of kids we don't think of.
I think these were really great. I wish there was a way to show these videos because that's what we're trying to explain.
It seems to me when we talk about parents a lot and a lot of the issues are there and are very complex. Complexity is common. Are we still defining the broader group of children that have healthcare needs?
What I wanted you to do is go into the break out teams and recreate and map the experience of the two people you have to work with.
The purpose of this activity is to stay with the people and not go to the system level yet. Please do the two people first and then we'll give you part two. In your breakout area you have two posters and two sets of written narratives. 15 minutes is not a lot of time.
If you have questions about the stories Gary can help as a resource.