MCHB ALL GRANTEES MEETING

Solos to Symphonies: MCH Partners Working

October 4-7, 2004

ELLEN AMORE: Okay, well I hope you’re not too sick of the symphony analogy but we had fun with it. We went with the solos to symphonies and ran with it. Kids’ Net is very different in some ways from what you heard about earlier, but I think the lessons learned about partnership are pretty much the same and so I’m going to be a little bit repetitive from what you heard before. Our first step was really to identify our partners and begin to establish relationships with them. We look for our national patrons of music, HRSA, The Centers for Disease Control and Prevention, various foundations like Pew Charitable Trust, Carnegie, Robert Wood Johnson. I only found out today that Russell was one of the project officers when we first got some funding from the Robert Wood Johnson Foundation. And it wasn’t just about money although we hit them up for money every chance we got. It was also about technical assistance, that they shared a vision providing opportunities like this to share and learn from others.

In the newborn screening world, HRSA has been a patron of the arts. To me universal newborn hearing screening grants, genetics, their focus on data integration recently, state systems development initiative money. We had a data utilization enhancement grant so we were able to use parts of their vision and help those meet ours and they’ve been very important partners all along the way. Musicians were the solo programs that Bill talked about and that you see on your graphic, pulling those internal partners together for the most part were easy, especially when they were in family health--our maternal child health division that Bill oversees because he’s the boss and--but they came not really reluctantly and did share our vision and work really well. For me a newborn screening world, that included the blood spot program, the hearing screening program, and also this developmental risk assessment that we do in Rhode Island on all newborns and that is actually what establishes a record in Kids’ Net so that was a very important piece to us and that program is now linked to our electronic birth certificates. So you can see there’s a lot of partners even internal to the health department, and obviously the audience who are we doing all this for are external partners, service providers that in one way or another care about the health and well-being and healthy development of children.

Medical homes, we have in Rhode Island no city health departments, no local health departments, it’s very different. We rely entirely on private providers or clinics. We have community based health centers but the health department does no direct service that would be of a medical home nature, so we really needed those providers as partners in this endeavor, and obviously families. That’s what this was all about, families and their children. So externally in the newborn screening world for hearing screening that would have involved audiologists, early intervention providers, our family guidance program at the Rhode Island School for the Deaf. For the blood spot that meant laboratory, specialty care clinics, maternity hospitals, there’s a lot of players out there and this was important and had benefits to them at every step of the way. And the other partner who I didn’t put up but you really need a conductor for this symphony and that was Amy Zimmerman, my boss, who’s not here but who really was the conductor of all this and helped everything fall into place and is really largely behind it’s success in collaboration with the other partners that we’ve talked about.

The first movement was to develop and nurture the relationships. Everybody knows relationships are important. That’s what it’s about. Invest in them, nurture them, and as Bill alluded to, feed them. We had to be a little creative about feeding people at many points in time with our state purchasing system, but people come together around food and it’s important and we really wanted to understand our partner’s needs up front. We really, really tried to listen. We did interviews, surveys, focus groups, we’ve even moved now to recently to what we call our Kids’ Net users groups where people who are using the system is almost like a little support group back in the early days when it wasn’t working as well as we would have liked. What was working? What wasn’t working? How could we change it? How could we help you because although there is a certain amount of altruism in the maternal and child health world, you know, you’ve all heard it has to be what’s in it for me?

And everybody’s busy and they need to get something out of it if they’re going to partner with you and help make this work. We needed long term dedicated staff which is not always been easy and has not always been our strength, but relationships do take time to develop and the longer the staff that we have are involved, the easier it is for us to maintain those relationships over time. We tried very hard to include all our partners early and often and we found one of the mistakes we made was it really has to be very meaningful. Again, what’s in it for me? We had an advisory group where initially when we were getting up and running and there was work to be done for everybody and there was good attendance, but after time it became more of a show and tell kind of a thing and the attendance dwindled and we moved to more focused meetings around specific purposes and that is really the motto that we maintain today and we just communicate with a larger group in various different ways.

Okay. Our second movement was teaching the partners to sing the same song. We heard from them what they wanted, tried to incorporate their needs in the vision, communication was critical. We called on experts when we could, experts to help us with these surveys. Not just in doing them but in interpreting the results and then sharing the results. We had people who knew what they were doing with focus groups, communication experts to develop some informational materials to share with families and with primary care providers about what we were doing in ways that would make sense to them and really describe what was in it for them and what was in it for families. Even with the name, when this whole process started we called this the Rhode Island Children’s Access Program and the initials were RICAP, and Bill had lunch with a friend of his who’s in marketing and he said, “You got to change that name. That is so bureaucratic.”

In Rhode Island everything is a RI this and RI that and people were sick of that and didn’t really--Children’s Access Program, what does that mean? It doesn’t tell people about it and we were so relieved to hear this because we all had been frequently making Freudian slips and calling it RICRAP instead of RICAP, so we all were in total agreement that we had to find a new name and we had contests and we eventually ended up with the name Kids’ Net which I think does tell a little bit about what it’s about, you know. We thought about networks and information systems and it was more meaningful to our partners and to everybody, so a big plug for you as the experts. We tried to benchmark progress and then share that back with our partners so that they could see that progress was being made. And this is a plug for performance indicators even though we would roll our eyes. A lot of our initial funding was from the Robert Wood Johnson All Kids Count initiative and they developed performance indicators that all their grantees reported on and even though it was a lot of work and we put those together, over time we could really see our progress, it energized our partners, it was a real moral boost for staff who were mired in the day to day problems of getting a big program up and running and that really helped sustain the involvement and enthusiasm.

Go with the future from the start. We did make one mistake about--we designed the system to the oldest equipment that was out there in offices because as part of our listening they had said, “Well, we have these old equipment. We don’t have fancy new computers,” and by the time we got up and running in the slow bureaucratic world in which we work, our partners were demanding more user friendly. They were demanding more--web access, being able to use their mouse, what are these “F” keys for, so that was one of the lessons that we learned. Patience, persistence, and creativity. If one person wasn’t ready to partner with us, maybe particular practice, we would just wait, go work with somebody else, come back. We just kept coming and when all else failed we used chocolate. And one of the creative things I think we did do was what Bill described was to move to that, sort of, provider liaison model where we do have people going out there that can really be a face from the health department to talk about Kids’ Net and WIC and lead screening and other important things that we do.

And for our grand finale, they are singing our song. We’ve seen increased use of the system. Again, that is one of performance measures, how often people are actually using it and we went from a few hits a day mostly from internal staff to many, many, many external users logging in daily and that is very heartening to hear and to see. Increased demand for the system. We currently can’t keep up brining practices and service providers online with the training and the back entry of immunization histories that has to be done. We recently piloted school nurse teachers using it, and we had a school nurse from Massachusetts call us up and say, “How can I get hooked up?” So the word is really finally getting out there. Our partners can articulate the benefits. We recently had a site visit at HRSA’s request from the public health informatics institute and we pulled together a group of users and I’m not usually very emotional but it really brought tears to our eyes to hear them say things, like, it saved time, there’s more time to arrange services for kids, it helps with tracking, we can identify babies who haven’t been screen, it eliminates missed opportunities.

We used to have kids walking in because they were kicked out of school needing their third hepatitis “B” shot. Now we just call them in the summer and tell them, “You’re going to need your shots.” Our partners really see the vision and are looking ahead. Our immunization program nurse tracks vaccine preventable diseases and she’s starting to think, she said, “Well, the lab reports often just are ordered by the ER or urgent care physician, and I’d like to see the lab system hooked up to Kids’ Net so I can use this in the work that I do.” Detractors can become your champions. Anne Marie who’s a nurse in a practice that has a large number of children with special healthcare needs said her boss, who also happens to be a partner in another realm. He’s one of our American Academy of Pediatrics early hearing screening champions. He saw no use for it. He thought it would just use up a lot of her time. She finally overruled him and said, “I want this,” and now she said he sees that it saves her time and improves the quality of care to his patients and he’s now one of our advocates, not just for early hearing screening but also for Kids’ Net as well.

And my very favorite is when--at the very end of this meeting people started to say--these were partners that we had brought together--they started saying, “The networking was the most surprising,” okay we’re talking about a computer system and people are now talking about human networking. I used to work in a more isolated fashion, now I have more interaction, more networking opportunities, particularly true for children with special healthcare needs. I know other players who are working with them and someone from the home visiting world piped up and said, “Primary care providers have called me to say, ‘I see you’re working with this family. Could you please reinforce the teaching that was done in my office last week?’” And so that really, really was very powerful and that is, to me, the power of partnerships. It really is, finally, after all these years working and we’re really pleased about this. In the interest of time I won’t go through this slide with you.

This is just to give you a sense of all the players in the newborn screening blood spot world, but as you can see there’s a lot of players and we’re still working with each of those groups to think about ways in which Kids’ Net can support the work that they do and improve care for children. And the lessons learned I’ve talked about throughout the talk and those are also on the handout that you have and it’s really been an extraordinary experience for me and an honor to be part of this partnership and I’m happy to have been able to share it with you today. Please don’t hesitate to contact Bill or me. Our contact information is on the handouts and thanks for listening.