MCHB ALL GRANTEES MEETING

Solos to Symphonies: MCH Partners Working

October 4-7, 2004

BILL HOLLINSHEAD: Thanks Ellen. Good morning. Ellen and I are the third piece in your musical program this morning and we’ll--so far as I know neither of us is particularly talented musically but we’ll try to keep it brief and reasonably harmonious. In a sense, Rush is also a player. In a former life, he participated in some of the earliest discussions of this when he was at the foundation. So we’ve got several perspectives on Kids’ Net. We’re going to spend just a few minutes describing Kids’ Net itself and then a few more drawing some lessons out of our experience with the many partnerships that have been involved in this. So I’ll tell you what we planned and then Ellen will tell you what really happened and where we wound up. You do have a hand out on your tables. It has the Kids’ Net graphic on one side and the lessons learned on the back and perhaps most importantly our numbers and email addresses if you want to talk about this in more detail.

Like most of you, we have a quite a lot of solos in our lives. Some say silos some say solos. It’s isolation. Ellen couldn’t find a public health person in a tutu, so you’ll have to make due with the ballerina up there and imagine whomever you chose in that role. Much of this began on the basis of a large portfolio of categorical programs with very different mandates and management cultures and different reporting requirements and schedules. Most of you are living that life in at least one of its forms. Some of these programs are actually very well established, very focused on a particular disease or problem or injury or billing need that had a history at a particular time and developed arrangements of its own including usually some attempt at a data system. Some, on the other hand, are very broad. Title V itself is, sort of, the best example of that where you have a mandate and an opportunity to work on a whole population, to work at multiple levels of intervention and system building, but also a pretty strong incentive especially in recent years to start by counting things and then decide what you’re going to continue to count to know whether you made any difference.

Some of the mandates that we work in maternal and child health are actually, kind of, separate and foreign to the whole healthcare system. At least in my world the largest single investment is actually out of the department of agriculture and has to do at the end of the day with transferring surplus food to low income people through healthcare environments. But the department of agriculture doesn’t care a lot about health record keeping or data and needs to be brought slowly into this set of ideas. Similarly with IDEA those of us responsible for Part C the record keeping and the data and information needed to deal with educational entitlements and with civil rights entitlements are fundamentally different than some of the things you’re used to keeping track of in a more market oriented medical care system. These programs are also often quite isolated in their work and stressed and under funded. We hear a lot about that and their leaders--state and federal sometimes, too, tend to see their data and even the data systems as a possession. Something they created and own and managed and sometimes are a little reluctant to share.

Often partly because they know they may not want to talk about the weaknesses, the gaps, the information that they don’t have or that isn’t very recent or very solid and are a little fearful of the embarrassments of that or what other people might do if they really did have good access to data across program lines. At the other end of the spectrum, those of you who are providers in health centers or clinics or other settings know the response to new data and new data systems and new data requirements at the street level. Would you care to give me a word on what happens when some bureaucrat walks in with a new form to be filled out? Bureaucratic hassles, more paper work, you’re driving us crazy. Can’t you see we have people to see this morning? And generally speaking, providers are a little skeptical--sometimes verging on cynical--about the quality of the data that comes out of their work and haven’t seen many recent signs that it’s been used to improve their work and their care. Budget pressures, therefore, are also pretty strong. You’ve heard a little bit about that from other presenters avoiding new responsibilities and long meetings and the (inaudible) of it is that nearly everybody wants better access to data that they need for their work, but they’re a whole lot less eager to gather and give data to others or to centralize systems.

Okay. Rhode Island had its share of soloists and all in their silos and this all began in the early ‘90’s when at least half a dozen of the programs in family health essentially came in about the same time, requesting new data systems. Either major upgrades or entirely new registries and tracking systems. We all knew in our hearts that we could do better together but that the resources--the incentives--came from many different angles. It was pretty clear from the beginning that we couldn’t afford multiple data systems across all these programs. There wasn’t enough money around and one of our strongest partnerships since we are a highly primary care base public health system in Rhode Island is very clear it was going to be tough enough to sell one new data system, let along six or eight, to the provider community. They wanted us to get our act together with them. The families and the docs were all frustrated. Families partly because they were tired of helping our staff fill out even more forms.

Often the very same or very similar information and as we talk with families about this they were also inclined to suggest that they spent more time, that they would have preferred helping us straighten out incorrect information that got into data systems and then couldn’t be used. The docs were just dysphoric about paperwork in general and wish they had access to what they thought we knew. The result--at least the rhetoric and there was some evidence it was true that some children, very high risk multiple problem children actually got more visits and interventions than they probably needed and certainly not very well coordinated. While there was a whole cadre of children and families that partly as a result of that excess investment at the deep end, we’re getting no service at all and this seemed a way to begin to address that problems. Physicians and their staffs in primary care settings who are our face and voice for public health in the state wanted much more dependable ways to know which of their children and families were in WIC and early intervention, what the lead screening status and other public health services were for their patients.

And so we set off to do the composition and here in is one of the lessons that I think you’ll hear. It’s really worth the upfront investment to do an assessment, talk to all the stakeholders and then invest in design and development in response to the real needs of all the people who are eventually going to be asked to participate. You’ve heard about evidence-based investments. This is, sort of, an information-based plan and it’s a partnership at multiple levels. We did manage to hammer out partnership among our own soloists in their silos. And over two or three years of assessment and planning, managed to share staff, managed to draw resources from WIC, from Early Intervention, from immunization as well as from (inaudible) more usually sources such as Title V, and fortunately also from some friends and foundations in national projects. It’s a partnership with community pediatric practices. You’ll see from the graphic we have linked to virtually all the significant providers of pediatric care in the state now, and in more recent years to Head Start as the kids grew up to be three and four years old and now the school nurses and others who are seeing school-aged kids and the health plans. It also--in a little less direct way--is a partnership with parents.

Every parent of a new child in Rhode Island receives a birth greeting from the governor and inside that is a card from the health officer informing them about Kids Net and how they’re child is enrolled and what it means and who they should call if they have questions about that. And the whole system is, if you will, both afferent and efferent. We work to make sure that we send out the information that practitioners and families (inaudible) but we work on the ease of submission as well into our system. It’s actually become a vehicle for many other kinds of collaborations and it is supported by a provider liaison staff of now three, three and a half, FTE’s modeled more or less on drug detailing. Something very familiar to practitioners and their offices. We have some people who go out and train and support and answer questions and from time to time, bring brownies to all the pediatric staffs around the stat and that makes an enormous difference cementing our partnerships. After three years of the assessment design activities, Kid’s Net went live in 1997 and has been enrolling every child born in the state since January of 1997 and every young child knew to care.

If born somewhere else, we register them as they first show up with an immunization or lead tester, whatever. It started with the major high volume providers in the state and we’re now working to draw in the last smaller practices, usually family docs with just a handful of kids in their practices. We’ve done it with loads of support from the bureau, from the CDC and its various flavors and silos. A number of foundations--our own health plans are ongoing investors in it--and from our own sometimes slightly (inaudible) musicians and the (inaudible) academies in the state. So Ellen’s going to tell you the working experience, and particularly from her perspective as manager of our new born activities that managing a critical program in the Kid’s Net environment, it is the management information system for quite a number of our programs and then we can talk about lessons learned.