AMCHP 2005 ANNUAL CONFERENCE
DELIVERING RESULTS, IMPROVING PREGNANCY & BIRTH
February 19-23, 2005
SAMARA VINER-BROWN: Thanks. Before I begin, I just wanted to ask were any of you at the Maternal and Child Health Epi Conference in December? Okay. Great. Well, I hope I’m not going to bore you because actually, I’m using sort of basically the same presentation that I gave at the MCH Epi Conference. It was the last session though, so maybe some of you missed it. So anyway, I’ll try not to bore you with the same information but it is still important because as Henry was saying, this piece is about utilizing data. So it’s great to have wonderful systems, but then what. So that’s why I kind of decided to call it what happens next? And what I’m going to talk about is Rhode Island ’s integrated, child integrated information system called Kid’s Net. And then I’m going to talk a little bit about some of the opportunities of having such an integrated system, and then we’re going to get into some examples of data utilization and then some ideas we have for future analysis and then just a few tips or tools.
So, in Rhode Island , as I said, we have Kid’s Net. And the overall goal of Kid’s Net is to assure that all Rhode Island children receive public health preventive services. Now, I have to just mention that we are in the process of doing a strategic planning or a review process where we’re now going back and looking at this goal. Kid’s Net was developed about, or it began development about 10 years ago. And I’m happy to say that I was involved during that process, so it’s been really fun to watch, you know, sort of this idea that many folks had, you know, turn into a reality and see how far its gone and to actually be in the position now to say guess what, we can use the data. So this has been a wonderful process, but over the ten years we now have felt like gee, you know, are we, is the mission, does it really, you know, speak to what we’re doing and in our vision.
So we our, we just began last week talking about our mission and vision. So, some day you may see another one of these presentations and the goal might look slightly different. So we have about 10 programs that are affiliated with Kid’s Net. Six of them are universal or population based. And the first one is newborn developmental risk screening. Every baby born in Rhode Island is screened for developmental risk factors and those risk factors include medical, demographic, psychosocial factors, a combination of those things would determine whether or not a baby is at risk for developmental delays et cetera. And if a baby is determined to be at risk, families are offered home visits because the whole point is that we want to assure that these families get the services and referrals that they need. The newborn developmental risk screening actually populates Kid’s Net. So we have data on every infant in Rhode Island , born in Rhode Island . Then in addition to that, we also have the newborn blood spot screening, newborn hearing assessment, immunization, childhood lead poisoning, and vital records. All of those are population, based programs and both newborn developmental risk and immunization are imbedded within Kid’s Net. The other programs actually provide data to Kid’s Net. So selected fields are given. And then we have targeted programs such as the WIC program, early intervention, our family outreach home visiting, which is also imbedded within Kid’s Net, and then we have birth defects.
Just a little footnote, I just have to mention, that as times change, our early intervention program was recently moved out of the Health Department and into our Department of Human Services. Hopefully, that won’t impact us getting the data into Kid’s Net but you know, it is something that we’re looking at in terms of what the impact will be having, because all of the other programs that I’ve listed are actually Health Department programs. So, you know, we hopefully will continue to get early intervention data into Kid’s Net. And this is just a graphic just to show all the different programs and also providers that have access to the system. So we have pediatric providers. We also have down at the bottom, Head Start, school nurses. Those are examples of users of Kid’s Net. I’m going to give a broader list of those users, but the wonderful thing about Kid’s Net is that it is a system where we actually can have folks who are seeing these kids enter data or access data from Kid’s Net. And basically Kid’s Net includes all Rhode Island births beginning January 1, 1997 .
So we’ve actually been around for some time and we have about 80 percent of the immunization data from those kids in the system. Originally, it was a dial in access system and as I said, going back 10 years, we did an assessment of providers and actually a lot of providers didn’t even have computers back then. So, now what’s really nice is to actually be able to enhance our system and make it web based. And a lot of providers are very excited about the fact that it’s web based. And then only immunization data actually come directly from the providers. And we also built within Kid’s Net a follow up and quality assurance component, so actually families can get reminded if their kids are now due for immunizations et cetera. So in terms of our Kid’s Net users, Health Department staff, those staff that are affiliated with programs that are within Kid’s Net. Primary care providers. We have about 75 percent of the primary care provider sites online.
And then we have various contracted agencies including home visiting agencies, WIC, Head Start as I had mentioned before, Lead Centers, School Nurse, Teachers, and then we have still more people that we would love to get into the system including Audiologists, Diminished Care Organizations, and other community based organizations. So overall the nice thing about Kid’s Net is that it links health and service care providers to the Department of Health and it facilitates this sharing of information between users who are providing services. And then it promotes comprehensive contacts. It’s not just comprehensive. It’s also coordinated because the whole thing is way back when we started talking about implementing a system like Kid’s Net, you know, a lot of different programs were knocking on family’s doors, you know, offering various services, home visits, et cetera.
So now, having a system like Kid’s Net really allows us to be much more coordinated and comprehensive. So it does provide, having an integrated system does provide lots of opportunities around, as I just said, around coordination. It provides linkages with programs and it also affords us the possibility of actually measuring Medical Home, I’m going to come back to that later. Allows us to do a little research. We’ve done things like looking at impacted mobility on health and educational outcomes. I’m going to give more examples of that. We can actually look at data quality and compare multiple sources of data with Kid’s Net, et cetera. And also it provides us with great information for our Title V needs assessment, which is now that season of developing our comprehensive needs assessment. So it’s a great tool. And so it really gives us lots of opportunities to do, look at our data and utilize our data, which is what I’m going to get into more now.
So at the Health Department we have a data and information group, AKRON and DIG. And one of our DIG, in several of our DIG meetings actually, we decided to really think about Kid’s Net and brainstorm how we could use Kid’s Net data and we had lots and lots of suggestions and I’m only going to give you just a few little examples of those great suggestions that folks had. So for instance, we can really look at how up to date children are and looking at the impact of say, home visiting. So in other words, we can ask a question like, are children who received home visits more likely to be enrolled in various programs like EI, like WIC. Are they more likely to be up to date on preventive care or have a Medical Home? We can also look at whether or not there are differences in continuity of care and program participation. And we can look at that by neighborhood, by provider type, by race ethnicity, et cetera, by various demographics. And then we can also look at completeness of care and ask various questions about that, so we can compare the quality and completeness of care based on birth order.
We can look at things like the impacted risks, specific risk factors on the completeness of care. We can look at the impact of various programs on mobility and completeness of care. And then the next one is sort of very funny for Rhode Island, does residence or distance from provider impact access and completeness of care because you know Rhode Island being little Rhode Island, being only an hour to cross the entire state. Believe it or not, the Rhode Island mentality is, and I think Laurie you can speak to this is that anything above 10 minutes is really kind of onerous and you have to think twice about whether or not you really want to make the trip. So, so residence is really something important even in Rhode Island . And then we can ask things like are there certain providers who have a higher percentage of children that are not completely immunized.
And then specific to Medical Home, we also, we like having lots of little work groups and so we actually also had a Medical Home indicator work group because the whole of issue of how do you measure whether or not a child has a Medical Home, that was something that we were really grappling with and I think a lot of states have grappled with. And so we, knowing that we had this great information system, it seemed like that would be a wonderful tool to be able to start measuring Medical Home and so what we did was we looked at each component of Medical Home as defined by the AAP, like accessibility, continuity, comprehensiveness, cultural sensitivity, all of that. And we looked at what Kid’s Net could, how Kid’s Net could be used to answer some of those components or speak to those components. So for instance, I’ve just given some examples here, is that we can look at preventive services looking at immunization, lead screening, whether or not those things were done on schedule and we can look at that by various demographics. And then we can look at preventive services and whether or not preventive services were provided by, the same primary care provider. And so that speaks to sort of the continuity. We can look at how many providers ended up providing preventive services by the time a child is age six. We can look at children who are entering school and whether or not they are completely immunized. We can also look at children receiving complete newborn screenings, immunizations, lead screenings, et cetera, to get at that comprehensive piece. We can look at those children who were not receiving services and we can look at children who were in EI and WIC but were never screened for lead.
So there are lots of angles that we can get at using Kid’s Net data and thinking about various questions that Kid’s Net can answer. Another example of how we’ve utilized Kid’s Net is for birth defect surveillance. We have birth defect surveillance now in Rhode Island for about three or no, four years. And one of the reasons we were able to develop a program using CDC funds was the fact that we had Kid’s Net. We added a field in Kid’s Net to flag whether a child has birth defect and we use medical record number and date of birth to link hospital discharge data to Kid’s Net. And we then are able to get lots of demographic data from Kid’s Net and we are also able to link birth defects cases across all the programs of interest like newborn screening, like early intervention, like WIC in our home visiting programs. So we can really start getting at that referral piece and really finding out, are kids with birth defects getting the services that they need? And then we’re also interested in doing various longitudinal studies, and we’ve actually done some.
We’ve looked at the impact of lead poisoning on educational outcomes. And I should just mention that these three that I’ve listed here, we have done in partnership getting to sort of Mike’s partnership piece, we actually have a wonderful partner in Rhode Island called the Province Plan and the Province Plan has a wonderful data warehouse. And that data warehouse includes Providence School Department data so we can get some educational outcome data from them. They have access to Human Services data, Housing data. We can look at crime data. So we really can start working with our data, their data, and asking some questions about what happened. What happened to kids who were lead poisoned and how, you know, how did that maybe impact their educational outcomes. We can look at the impact of mobility on preventive services and educational outcomes. And with that project we actually found that those families who did move several times in a given period, actually the kids were able to get the preventive services that they needed. But what we did find is that the more moves that a child had, the more likely they would end up repeating a grade in school later.
So that was a really, you know, fruitful partnership, fruitful study. And then we also wanted to sort of take our mobility study and go the next level and actually look at neighborhood factors that impact mobility as well. So we’re really trying to develop a set of neighborhood indicators. And then from a future studies that we’re considering or almost about to do, I just developed a scope of work that we’re, that’s in draft, looking at teen pregnancy and again, sort of in this similar vein to some of the other ones that I’ve mentioned, look at children born to teens and find out again sort of what preventive services were provided, what were there educational outcomes, what programs were they enrolled in? So we’re very excited that we’re about to embark on this teen pregnancy study.
And then in terms of program evaluation, we want to utilize Kid’s Net and utilize the data that we have to evaluate both our newborn developmental risk screening and home visiting programs as well. And then we have the pregnancy risk assessment monitoring system within our division as well. And Kid’s Net also allows us to ask some questions about PRAMS respondents and program enrollment. We can ask certain questions about preterm birth and enrollment in various programs. And then we want, we have, the nice thing is, is that we can take Kid’s Net, we can take our pregnancy risk assessment monitoring system and then we’re about to, like within a couple of weeks about to, implement a toddler follow up survey to our pregnancy risks survey. The toddler is called twos and this really will provide a wonderful opportunity to really look at the span from birth through toddler-hood and someday we might even want to implement a survey down the road of five year olds and up. So there’s anyway, the opportunities are just endless and then in terms of just some of the things that we’ve learned along the way and what’s worked in Rhode Island is that when it comes to using data, we have tried to do that in a group process and brainstorm various ideas.
And so we’ve tried to include as many folks as possible including the Kid’s Net staff, program managers, data managers, epidemiologists, and also some of our partners as well. And then it’s really important obviously, just to set priorities. You know, you have lots of wonderful ideas, well, you know, how do you decide which one you’re going to do? And so, you know, you have to think about the impact, the biggest bang for the buck kind of thing. Resources clearly play a role here. And, you know, just in terms of whether the issue is of high concern either sort of in the legislative world and, you know, whatever. So all of those things kind of factor into our priority setting and in terms of the resource issues, staff and financial resources are at a real minimum these days and so it’s been, you know, you might have wonderful ideas for projects but if you can’t have people to do them or money to do them, then you know, they’re never going to happen.
So, we’ve tried to utilize a variety of different grant sources including Title V, immunization, et cetera, to try to conduct some of these projects. And as I mentioned before, working closely with our external partners as well. And you have to also be realistic in terms of timelines. We actually in our neighborhood analysis with the Province Plan had sub contracted with someone and then as it turned out, they really didn’t have the time right then to do this project, so we’ve had to sort of put that project on sort of a back burner and start sort of working on some other things. So it’s sort of we have to be flexible and be realistic in terms of timelines. So, I just used this as just a little diagram in terms of integrated systems and how they lead to program linkages and quality assurance and they allow you to do program evaluation, which then can lead to program enhancements and policy development and expansion, and it’s a wonderful thing. And so hopefully it leads to excellence. That’s really the key. So with that I thank you. And actually just, I should just mention I just wanted to mention my colleague Amy Zimmerman who some of you might be familiar with, because Amy oversees the Office of Children’s Preventive Services and also oversees Kid’s Net and we’re sort of like, I don’t know if you’d say the mother of Kid’s Net or whatever, but Amy is really, you know, critical to the evolution of Kid’s Net. So I just wanted to mention and I gave her contact information as well. So, thank you.