HRSA/MCHB 2005 FEDERAL/STATE PARTNERSHIP MEETING

PUBLIC HEALTH ACROSS THE LIFESPAN

Newborn Screening to the Medical Home: Creating a Child Health Profile

WILLIAM HOLLINSHEAD: Thank you. If you have a certain sort of subconscious sense of familiarity here at least in the tone, I actually grew up in St. Paul too. So when we talk about heading home in this instance it’s not to Lake Wobegon although all our kids are above average too.

In Rhode Island, if you know nothing else about Rhode Island you know it’s small and so I was reminded by a colleague from a much larger and wetter jurisdiction than Rhode Island that this may not, there are some issues to scale here. We have a birth cohort of about 13,000 in average year but I’m also working at a little higher altitude in terms of sort of looking at it from a Title V director’s point of view. I will talk a little bit about follow up to Newborn Screening but there are a number of other things you can do with one of these data systems once it gets going.

I missed the conference call with Debbie and Dave and the others so I had to rely on what they wrote me in an email as to what we were supposed to be accomplishing here. I’ll do what I can to talk a little bit about newborn screening follow up and program interfaces and funding and CQI and electronic health records and such. My other task was why is this important for Title V leaders and the third instruction I didn’t fully understand is how did I get committed to this or maybe after doing it for awhile how did I get committed period.

Our history goes a fair way back, not all the way to George but in the early 1990’s I had at least six, some would argue nine different programs with various requests to upgrade or in most cases really create for the first time adequate electronic data systems and tracking capacities. There was obviously a good deal of money involved and it didn’t take rocket science as they say to conclude that not only was it going to be unaffordable to do all of that but many of these programs were tracking the same kids and families and that the families and the docs and others involved were already kind of frustrated by our silo behavior and the competition and confusion and overlap and relatively poor support that they felt for the information demands already placed on them. Making that mess electronic was not going to advance anybody’s causes. It was also pretty clear that even from that sort of antidotal information we had at that time that quite a number of kids and families got redundant services, were visited by outreach workers from many different places and there were clearly a fair number of families that got none. We rely almost entirely on the primary care model of public health. We close down all local health departments and sort of direct contact, retail, clinical public health activities in the sixties and seventies and consolidated that all into Community Medical Practices that we work hard to upgrade to the medical home standard.

But many of them haven’t always felt that they were in the loop or really fully included in the work of public health and the agenda setting and some of the other issues that we face on their behalf or as their spokespeople. After a good deal of agitation and consultation and spending a fair amount of David Heppel’s and other people’s money, Robert Wood Johnson in the early going, the immunization registry funding that was coming from All Kids Count, we actually created an integrated information system and opened the door on January 1 st, 1997. His name if I recollect was Jason, I’m embarrassed I forgot his last name but we had a big press conference and the governor was there and mom in her bathrobe and a proud dad and there was Jason as the first Kid’s Net kid. We didn’t put a barcode on his diaper although we thought about that and we have captured we think, every single newborn in the state since the first of January, 1997 and a fair number of other kids by other means as I’ll describe. Including a bunch of other kids from Massachusetts and other places who sort of wandered in by irregular channels. We have all the kids in those birth cohorts and is now somewhere over 100,000 kids and records of a million and a half pushing two million health events in there.

It’s a mixed system, unlike Nan ’s it’s not just a network of other people’s databases. We’ve actually built the immunization program database, the newborn screening database, the home visiting database. A couple of others actually manage their programs in the Kid’s Net environment. If the Kid’s Net computer crashes there is nothing they can do either. That’s commitment and sometimes a little reluctant but there they are and we’ve got major players actually in the tent with us. Others are outside but connected at the interface, as I’ll show you. The idea is to track children’s preventive health services and make sure they all get them. The idea is to link health and other providers including childcare and school nurses, audiologists to the Department of Health in the ways that you have heard described. It’s a bridge; you can push a lot of things across bridges so it facilitates sharing of information between authorized users in a variety of other ways. Certainly we believe promotes comprehensive contacts with families.

This is way short of one of those geeky system diagrams but it shows you what is connected to Kid’s Net today. It starts with the newborn screening, the developmental risk assessment actually that is downloaded within 24 hours usually, maximum within 48 as the beginning of the record and then tracks the newborn screening blood spot metabolic data in real time to do the QA and such on that. It also loads at least one immunization on virtually all newborns and it interfaces with the hearing assessment program to assure that every kid gets that. Obviously we have thereby a newborn screening, a hearing screening and immunization record and we’ve automatically referred if they meet the referring criteria to the home visiting program for developmental and psyosocial or other risk factors.

It’s connected to pediatric providers, virtually all the pediatric providers in the state now and they have access to those data pretty much when their patients come home. It is connected to WIC. WIC obviously is one of these programs that characteristically knows these families before the kid was born although not always all the information that we have. It begins promptly to accumulate additional information such as immunizations and later lead screening. It actually serves as the newborn child find requirement under IDEA for early intervention so that we have a two step process starting in the newborn nursery but extending if necessary to a three and six month developmental follow up by the home visitors to assure that kids get access to early intervention if they are eligible for those services. It’s also the first database for the essentially brand new Birth Defects Surveillance System.

First thing we need to do with that program is to change the name but it also is an assurance of follow up and higher level CQI operation. Course as the birth cohorts of 97 and 98 and such have gotten to kindergarten and several others have gotten to head start we’ve also linked to school nurses and the head start programs and others that need to have this data to meet our own regulations for starters but also to make their lives more efficient and they’ve now all signed provider agreements and we’ve worked out all the protocols and such to link to the schools. I think we’ve got every district now or maybe we are still short one or two. Infant follow up, here’s all of newborn screening in a single slide. We do manage the Newborn Screening Program within this, not the actual metabolic testing part because that is done at the regional lab in Jamaica Plains but we have real time interface with them as well.

Flags specimens that need follow up, allows us to do CQI I think since September of 2004 if memory serves we’ve identified fourteen kids who have actually missed specimens entirely and about sixty whose specimens and follow up didn’t meet our standards for timeliness. So far as we know we haven’t missed any disease but obviously that is the ultimate worry as we were hearing earlier. It does reports and reminders in connection to the medical home. The system can generate follow up letters and such if the provider wants that to be done by the computer. Most medical homes want to do that themselves but we help them with the drafting and development of that. It does direct referrals to home visiting and child find follow up on developmental screening with the home visiting contracts around the state. They simply download and go see these families. We don’t have to intervene at all for the ones that clearly miss criteria but families’ can self refer to that and docs can refer to that. There are lots of other ways you can get into that program so they need to tell us if they are home visiting a family that we didn’t automatically refer to them. It codes for early intervention participation and I’ve mentioned that we now have a partnership with Early Head starts which are growing thankfully in our environment and so they get involved in following up with families who may have questions about development whether it is metabolic or hemoglobin apathies hearing or whatever.

As I’ll show it in sort of shifting into why should this matter in Title V mode, it allows us to do some measurement and even some sort of free thinking with our allies around medical home performance measures and even our early childhood developmental screening grant. I didn’t go into the details of this other than it’s in your handout. You should have a sort of yellowish handout around that has all these slides on it. One of the great values now that the system is in place and connected for virtually all providers and for all the kids in the first seven or eight birth cohorts is you begin to be able to system performance measurement and sort of seek your eye at a higher level. We can know the coverage of the kids coming home in terms of public and private insurance coverage and theoretically at least multiple insurances. Penatrance into different target populations, ethnic groups, geographic areas and the like. Perhaps more important we can actually measure the engagement of those kids in care. Not only were they insured but did they get their first immunization, did they get follow up on their developmental screening and the like. So you can see whether the kid got to the medical home and do at least in a fairly crude way measurements of variation in that over space and time. It obviously is designed in part to be a measure of completeness of care. We have an elaborate and increasing complicated algerhythm in it to be sure that not only did the kid get all the required shots but the intervals were correct and if you used Aventiss’s product for the first two shots, did you use somebody else’s for the third and what does that mean. It gets just mind bendingly difficult to keep that in anybody’s head and the computer at least in theory knows how to do that. That’s something I’ve taken on trust. I haven’t actually checked it myself but obviously the agenda here was to ensure completeness and comprehensiveness of preventive services across the whole population. So we do do measurements and we report to our federal friends and anyone that is interested the proportion of kids who have achieved the full package of immunizations and lead screening and developmental screening by sixteen or eighteen months of age and then again later at intervals.

Potentially, although this drives my colleagues who run this system crazy because we haven’t done much of it; it is also very powerful to measure continuity. Not only did you get all the services, did you get them from the same place? As it turns out for those of you who have been reading literature from a family’s perspective not just the quality but the long term impact of care has much more to do with sustaining a trusting relationship with a known person, a face you can remember than just being sure you got all the shots and somebody touched all those spaces along the way. So we can look at continuity over time and for different populations and in different languages. We can even at least in theory do continuity within families so you can look at sib ships. Did Johnnie get his preventive services from the same sources and at the same schedule that his older sister Susie got a couple of years ago? So that to the degree that those issues become Title V concerns there is the potential to measure them in this kind of reasonably complete system now. We certainly can look at transitions across the systems that we’re responsible for. The ones I’ve mentioned and into school and we honestly haven’t decided when we are going to close this down. We’re clearly not going to follow these kids until their fifty but at one point we thought maybe if we got them to the third grade that would be sufficient but now there is enough immunization and other stuff going on in middle school that we are going to keep going. I’ll retire and somebody else can make that decision later on and I’ve all ready talked about quality of care issues.

Electronic referrals we’ve actually already got it going but with the advent of the wonderful new electronic record and a much more information savvy world out there we can and may potentially do the same kind of automatic child find referral at the age of three if we have developmental information that would indicate that if family’s permission status allows it to local school districts for instance. I’ve already talked a little bit about surveillance and program and policy uses. These tools if shared according to our former boss’s aphorism that this is not a possession, it’s remarkable what you can do in the WIC program if you have access to all these other data on appropriate basis and vice versa. The interaction with electronic records, we are one of the brailer states, what are we suppose to call ourselves, Arch Projects or something, I don’t know.

The brave new world of the electronic medical record will approach you from the north east in Rhode Island and it turns out the principle impact thus far is they swiped our Kid’s Net director who really is the mother of all of this has now moved on to a higher level to work on the governor’s information technology task force and God bless her. We are barely surviving without her. If she can do for that what she’s done for Kid’s Net I guess we’ll all be greatly grateful. Turns out it works the other way too. One of the realities of the state wide electronic medical records system is the question and the cost of who’s going to populate the dam thing once you’ve got this installed on your office computer. Well there is nothing to say that Kid’s Net can’t download all the immunizations and lead screening and all the stuff that’s in there in to a practice’s electronic record system if things are set up appropriately. Everybody has the right permission; you know who the patients are and such. That turns out to be actually quite a saving. That is quite an issue if you are going to install electronic records. So maybe we have kind of made a down payment on all of that. The other big thing in this brave new world has to do with decision support alga rhythm and how to help docs despite their natural tendencies to think in systematic ways and behave in pretty much the same way each time they face the same kind of diagnostic dilemma. We’ve actually done that at least for shots and for some other things so we can move on it’s two minutes from the end. So let me talk about X.

Successful Start is our early childhood system and the big focus is a much broader connection of developmental awareness and recognition of development issues and response to them. Not a new idea for MCH but it has been a very strong theme. That’s where I was last evening in a big sort of kick-off, lift-off whatever event around our work on young kids and their development and we’ve already got a universal development, newborn developmental screening system in place and tested in electronic. We are well on our way with the Academy and others to convincing docs that they should especially if they get reimbursed for it, use a shared tool and share it with each other and others who need to know. The home assessment and home visiting teams are most of them are already trained to do the Devro but we’re going to upgrade their capacities to do developmental screening and tracking with kids and then use Kid’s Net to connect them to the medical home.

Probably most productive although also the messiest, we are going to attempt to give sort of a basic tool to all childcare providers and have them do it in sort of an interactive way with the parents at appropriate intervals. Also to raise everybody’s awareness but I think this will actually turn out to be a pretty powerful surveillance system. Obviously we’ll have to work on specialty and mental health capacity because we are going to find a lot of problems earlier we think. I’ve already mentioned child find and IDEA roles. Parent chose, at the moment parents have access to Kid’s Net but only at their medical home. They can’t just dial up and look at it themselves which is an issue that gets raised from time to time and maybe we’ll eventually get to that. So I’m still committed and Kid’s Net is now getting close to its tenth year with a lot of help from our friends. Dave Ross has been around pretty much from the beginning. We’d be delighted to share it. I have no idea whether it could be expanded to work even in Wisconsin let alone Florida or New York but it’s in the public domain. You can have it if you’d like to try. Thank you.