Use of Electronically Integrated Databases for
Surveillance and Follow-Up of Children with Special Health care Needs
Cathy Gunderson: Thank you,
Bill. You can really hear me. If you heard what Marie said when they
introduced them, I am not a health professional. I am an IT person and as Kathy pointed out, I was hired on this
project because she had the foresight to see that, you know, a health
professional wasn’t going to be able to design a system and so I’ve learned an
awful lot over the year--two years, now, that I’ve been on this project and I
know a lot of your language. I know how
to say hemoglobinopothies really well now, but as you know, people in IT talk
with a lot of acronyms and we actually have an acronym for the acronyms which
is a TLA which stands for a three letter acronym. So I know I’m probably going to talk in a lot of acronyms and I
explained some of them up here, but if I say something you don’t understand
what I’m talking about, please raise your hand and we’ll try and get that going. What we’re going to talk about is we’re
going to talk a little bit about the CDC Cooperative Agreement that we have,
which is the EHDI. We call it the
grant, but it’s really Cooperative Agreement.
We’re going to talk a little bit about the analysis that we went through
to start our development. We’re going
to talk about some of the technology challenges that we’ve had to overcome and
are still overcoming. We’re going to
talk about the steps that we had to take to get to the implementation of our integration
and then if there’s any questions--and, while I’m talking, if you’ve got a
question feel free to ask it then.
Okay, I told you we’re going to do some TLA’s, but we’re really going to
FLA’s which stands for a four or a five letter acronym, so I thought I’d get a
couple of these out of the way so when I’m talking you’ll know what I’m talking
about. CDPHE is Colorado Department of
Public Health and Environment; that’s the Colorado Public Health Department. EDHI is the Early Hearing Detection and Intervention
Cooperative Agreement that gave us the funding for us to start this integration
project. CHIRP--oh, I missed NEST. Because we were doing more than just newborn
hearing, we actually call ourselves the EDHI NEST Team and we came up with NEST
as an acronym and it stands for Newborn Evaluation Screening and Tracking. And then a little bit later I’m going to
explain why we had to come up with another system that we call CHIRP, which is
the Clinical Health Information Records of Patients. And then the other acronym that you probably need to know is
CRCSN, which is the Children with Special Healthcare Needs in Colorado it is
HCP. I said CRCSN, this is CSHCN. See, your acronyms get me confused. The project goals that we had were to
develop a comprehensive statewide EHDI system.
EDHI goals can be summed up in the numbers one, three and six. The one stands for they want every child
screened by one month of age. The three
says we want to have them diagnosed by three months of age and six is we want
to have early intervention started by six months of age. We’re fortunate in Colorado to have a woman,
Kristy Yoshinaga Etono, and you may have--some of you may have already heard of
her. She’s done some research on
newborn hearing and she has determined that if you start integration on a child
who is deaf or hard of hearing, by the six months of age that they will
actually develop at the same rate as a hearing child. One thing that I wanted to point out is that we did end up
designing two different systems and I’ll show you how they work separately and
how they work together, but one thing that we really wanted to do is we wanted
to take advantage of the funding that we had to develop something that will
live beyond the end of the EHDI grant and we wanted something that would be
functional and something that could be easily changed. We wanted something that was scaleable as
well as portable so that we could port it to another state if anybody’s
interested on either one of these or actually use the CHIRP application in
different kinds of sub-specialties.
Colorado screens for eight different conditions right now and
hemoglobinopothies--see, I told you I could say it--inherited metabolic
diseases, and I’m not going to say all them, cystic fibrosis, two endocrine
disease and newborn hearing and one of the things that we’ve done is with CHIRP
and with NEST is this is designed in such a way that you can add things to
it. Colorado is just starting to get
into the tandem bass-spectrometry and we would be able to add because both
systems are table-driven, we could add as many other conditions that we want to
test for and just add them to the table and the application will work. The project that we have, we had to go about
investigating all the current processes that were in existence so that we would
be able to integrate those things and we also had to go by a lot of federal and
state different standards and laws and everything like that, including, of
course, everybody’s familiar with HIPAA, and we’ve got that too. And as far as--I’m sure a lot of people have
heard security standards. They’ve heard
of HL7 and also of Cedars and there’s one other that uses it too. Basically all those things, what they’re
doing is they describe how you want to transmit the data from one system to
another system and that’s basically what we’ve incorporated in our system also
is we are defining the transactions that are going to allow us to share data
across these systems. So then we had to
start our development and we actually had to take a two-phased approach. The reason we did that is because the way
the EHDI grant was written, we needed to incorporate newborn hearing screening
with sickle cell and PKU. Well sickle
cell was done by the Sickle Cell Clinic and PKU was done by the Inherited
Metabolic Disease Clinic. We went to
those two people and we said, “We want to integrate your data with our data,”
and they said, “We don’t have our data electronically.” Well that make it a little difficult for us
to get it from them electronically and then we discovered that that’s probably
the case with a lot of the sub-specialties.
In Sickle Cell, they had a nurse who knew Access and she said, “Well, I
kind of have it on an Access database.”
So we went and everything was like a flat file, which is, “Yeah, you can
use Access that way, but it’s not really the most powerful way to use
Access.” So what we decided we would do
is we would take a two-phased approach.
These are all the different sub-specialties or agencies--I’m not going
to read them all off to you--that we are trying to incorporate into our
integration project. We also had to
take into account everything that already existed out there. Some people did have their own
databases. Cystic Fibrosis already has
their own Access database and they have already agreed that as soon as we
determine what the transaction looks like going between the two that they will
take over that responsibility of doing the changes to their system. A couple real important ones here is the
IRIS system and this is a system that is used by HCP, which is our Children
with Special Healthcare Needs Program, and it allows the--we have 14 regions
within Colorado and there’s a public health nurse associated with each of
those. The regional offices all use
IRIS in the--so the client base is on there of everybody that we are doing case
management for. It’s real important to
have them as part of our integrated system because that’s a way for us to
actually reach out to people outside of the Denver Metro Area. CRCSN is the Colorado Children’s Handicap
Registry and they wanted to be part of our integration because currently they
have to contact certain families and the way they do that is they send out a
letter to the HCP regions and ask them to contact the families and so they have
to produce a letter, they have to send it out, the nurse has to take the
letter, do something with it, send the letter back and now we’re going to be
able to do it electronically. So we’re
developing in two phases. The first
phase was CHIRP, the Clinical Health Information Records of Patients. This was developed--we worked very closely
with Dr. Peter Lane of the Sickle Cell Clinic in Colorado and he was very
meticulous about what kind of data that he would like to have and what he would
like to see coming out of the system, so what we came up with is we had to come
up with something that could be used by lots of different sub-specialties. We needed it to be able to handle all of the
diseases in the clinic. On the previous
screen, you saw that inherited metabolic diseases screens for three things in
Colorado, but they have over two hundred diagnoses that they deal with within
CHIRP. Only those three will actually
come back to us at this point in time.
We have standard reports. We
have an ID card that comes out that a sickle cell patient can carry with them
or a PKU patient can carry with them and when they go into the emergency room,
they have this emergency card that shows what their diagnosis is, what their
latest treatment is and some of the latest problems that they’ve had. We did have to do some customized reports
because--like in inherited metabolic diseases, most of what they do as
treatment is actually put a child on a diet and so the diet wouldn’t really be
used in hemoglobinopothies, so we did have to do some customized things. And we did come up with a standard user
manual that they all use and this is our user manual and we’ve gotten some
really good feedback on it and if anybody needs to or would like to have a copy
of this, I do have some copies of this.
If you--not in a binder, but if you wanted to take that with you, you
could. Phase two is the NEST and that
is where we’re actually going to start the integration. It’s going to be population-based and we’re
not going to--in the NEST, we’re not going to just keep track of children that
screen positively for something, but we’re going to keep track of all the
newborns. We’re going to keep track of
the risks that they had identified at the time of birth and if they have a
later onset of hearing loss or some kind of condition, we can always go back
and use that for determination to see if we can figure out if there was
something that we could have done. We
also--because it is population base and it’s also table-driven, right now we
are only planning on keeping newborns.
We don’t have an upper age limit that we want to stop at. EHDI requires that we keep all the
information until age five, but then they say, “Well, we’d kind of like to see
how well integration did when they’re 12 years old,” and then we were thinking
we could put HCP in there so then we could go all the way up to 21. So we’re looking for another word other than
newborn for the N and the only suggestion we’ve had so far is nifty. NEST will be centralized and
administered. There’ll only be like two
or three people that will actually have direct access to the database. Everything else, as you can see, is going to
be electronic. So let’s talk about some
of the technology--and I’ll skip over some of these seeing you may not be real
interested in some of these, but we had to develop a system for patient
information to be used by the agencies and the reason we made that phase one
was because they had to have time to put all of their clients and everything
into there, so by the time we have the NEST built they’ll be ready to start
transmitting data back and forth. Then
we need to develop a common, centralized database, which will be the NEST, and
then we have to develop on the--with using platforms and the software that’s
actually available to us. So as far as
phase one was concerned, we had to provide it for the sub-specialties. We needed to capture all the minimum amount
of information that we want to come back to us. CHIRP holds a lot more information than what we need or what we
want. We don’t want to be responsible
for the whole electronic information on all of their clients, but we do want to
have times when they were diagnosed, times when they were seen, those kinds of
things. We also had a situation where
we needed to have it done in Access and we have two clinics that are actually
using it in Access at their local sites on their LANs, but we also had a reason
to have it available on the Internet and so we had to convert it also to an SQL
server. So we actually have three
versions of CHIRP running right now; two in Access and one on SQL. The SQL database is at CDPHE and that’s the
database that we’re using now for Newborn Hearing and we hooked it through a
product a called Citrix. Is anybody
familiar with Citrix? Citrix is a
software product that allows you to establish a VPN, which is a Virtual Private
Network, over the Internet. That was
already there and that’s why we went with Citrix on CHIRP, but we’re--that’s
all ready. As soon as we get the NEST
working, we’re getting off of Citrix, but it works for now. The challenges that we’re going to have for
phase two is we’re going to have to have, within the NEST, an unduplicated
count of those patients, so no matter where our source comes from, we want to
make sure that if that person’s already known within the NEST, we want to be
able to give them the same ID number and hook up all the results with that same
person.
Unidentified Speaker:
(Inaudible).
Cathy Gunderson: You know,
I’ve had a lot of people ask me about numbers and, you know, numbers really
aren’t that important. It’s--you have
to have a unique number in there, but the number that I have within the NEST
doesn’t have to be the same number that we have in a CHIRP. We just need to know what--when we’re
talking back and forth we need to each transmit each number back and forth and
I’ll show you how we’re doing that. The
number that we’re going to actually use within the NEST is going to--the first
four characters are going to be the year and then it’s just going to be a
sequential number after that up to ten digits.
Unidentified Speaker: So it’s a
hidden number, not a number that you would key in.
Cathy Gunderson:
Correct. Right.
Unidentified Speaker: Okay.
Cathy Gunderson: Okay the
other thing that we want to do is the NEST is also going to provide the actual
interfacing between the different agencies and if you--we’re going to get to a
picture pretty soon here which kind of has the NEST as the hub of a wheel and
each of the agencies is going to be a spoke on that wheel and everything has to
work together for it to run right. The
only things that we’re really going to keep--maintain on the database are going
to be all the kind of activities or events that happen around a particular
patient or a person. We’re going to
keep demographics and we’re also going to keep an audit trail. If anybody’s dove very deeply into HIPAA,
you know that you have to have your audit trail. We’re also going to do some bleeding edge technology. That’s another IT term. There’s a new software out
there--development technology called Dot-Net and some of you may have heard of
that already. Microsoft came out with
that just this last year, but it is a really powerful tool and it allows you to
get onto the Web very quickly, we hope.
We need to have a lot of Web services, so we’re going to need to design
for the interfacing and then also design for a person actually coming in
through the Web and entering directly into the NEST rather than just the interfacing. We’re going to do our transmission back and
forth between different systems using something called XML, which is
extended--I think it’s monitoring language.
It doesn’t really matter what it stands for, but it’s--it is just
exactly the same kind of technology that’s being used by Cedars and by
HL7. They’re all using XML. We’re going to use a product called BizTalk
and it’s relatively new and especially we’re going to use--start using a beta
version of it which really won’t be released until next January, but we’re
getting a little ahead of the game because the new version of it is just so
much better. With all that done, we
come to our big picture and there is a big picture in your handouts or there
should be some place in there a bigger picture. I don’t expect you to read all this stuff. Well, let me point out a couple things
here. First of all, in the center here
is NEST. This pink line down here, this
represents Newborn Hearing CHIRP, but for our discussion, any other
sub-specialty agency can be considered a pseudo-CHIRP. The way that any CHIRP or any other
sub-specialty is going to communicate back and forth with the NEST will be
exactly the same. Down here, we have
our CRCSN, which is our Handicap Registry.
That’s going to be communicating back and forth with the NEST. We have an immunization database that will
be communicating back and forth and we’ve got our HCP IRIS, which was our data
management--or case management. We’re
going to be talking back and forth there also.
Unidentified Speaker:
(Inaudible).
Cathy Gunderson: Yes.
Unidentified Speaker: In Newborn
Screening, you’re going to have Baby Girl Jones and Baby Boy Sam,
whatever. You’re going to have a
different name in nearly every one of these areas and you say that you have a
hidden number, but how do you put a common denominator or how do you get a
common denominator?
Cathy Gunderson: Okay. We’re going to actually go into that. I was going to kind of skip over that, but--
Unidentified Speaker: No, don’t
skip over that.
Cathy Gunderson: Okay, I
won’t. We’re really fortunate in
Colorado. One thing that we do have and
if you look up in the upper left-hand corner, there’s a green box up there and
that’s actually the hospital itself. We
have a product out at the hospitals called Genesis and some of these other
states may have that same product.
Genesis is a system that allows a clerk at the hospital to enter
information in there about the baby and it’s--to send that information down to
our vital records and that becomes our electronic birth certificate. What we’ve done--and they did it before I
got there, so I can’t take any credit for it--but I think it’s marvelous, is
that they have added additional fields to the EBC record and they can actually
put in the initial Newborn Hearing Screening results. So that’s one match I don’t have to do because that Newborn
Hearing results comes in with the EBC.
Over on this side, the big arrow going across the top is where they take
the blood spot and they send it to the state laboratory and the state
laboratory performs the tests on it and then they have their results in their
database and then that information is going to come into the NEST. Now just as he pointed out, if you look at
the information coming from the laboratory, we have B. G. Jones and stuff like
that, but there is some other information that we have on there and I’ll show
you how we’re going to use that information to try and come up with an
unduplicated count. So what do we need
to do to start our integration? The
first thing we need to do is we need to load the data onto the system. We have two sources of our data; the
electronic birth certificate and it’s reported by--right from the birthing
hospitals of Colorado and they are required to report that information within
ten days of the birth. We also get it
from our Laboratory Services Division.
They just came up with this acronym and those of you that lived through
the 60’s probably have a different version of that explanation, but anyway, we
call them LRS. They used to have an “A”
in there. They process all the blood
spots that they receive within 24 hours, so since they go through the mail we
can have the report as soon as three days, but I’ve--in looking at the data; it
looks like more like five days. So
really, this data will probably get to us before this data will. We’re trying to encourage these guys to do
it better. The other thing that we’re
doing is we’re getting an additional field or there are additional fields on
the EBC certificate to put in the form number that had the blood spot. So if we’ve got that form number that will
also help us link that up to the right person.
So here you’ve got another picture and there should also be another big
one in there for you and this just shows the initial load. That we’re getting information from the EBC
and we’re getting information from LRS and we’re putting them together in the
NEST. What we’re getting from the
electronic birth certificate is a unique birth certificate number. The problem that we have is the data isn’t
cleaned yet, so, you know, we have some problems with that. There may be some duplicates. We actually have the hospital sometimes
accidentally sending the same baby twice and so right now we actually get an
extract from the EBC and we’re dumping it into our Newborn Hearing CHIRP, which
once we build the NEST that transition will be going into the NEST rather than
into the CHIRP and we have found that there are duplicates out there. Now what happens is Vital Records
periodically goes through and cleans up their stuff and we’re going to start
getting corrections from them, but we’re going to try with our routine to try
and find those duplications and maybe we’ll tell them about it instead. We also--this is another area that we had to
come up with some kind of ideas, too, is that our Vital Records is notified of
Colorado residents who gave birth to their child outside of the state. We also have a lot of home births in
Colorado. We have babies that are born
in transit and we have babies that are born in an unknown facility. I’m not sure what that means. So we’ve had to accommodate all of those
things also and the information that we get from the EBC is also pretty cool
because it contains a lot of other medical identification things and if you’re
familiar with what goes on your certificate, you know that there’s a lot of
conditions that are identified on there.
There’s also some demographics about the newborn, the mother and the
father. Enough information to generate
the birth certificate, but they also come up with a lot of conditions that we
can turn in--on the NEST, we can identified them and turn those into
risks. We get this tape on a daily
basis. Weekly we have started getting
infant death records and we put those into NEST and that will prevent us from
automatically generating a letter to go out to a family who has just
experienced a death of a baby. And then
annually right now, we may get it more than that, we’re going to get the correction
tape and the main reason we’re going to do this even that far out is that most
of the statistics, as they are reported to the Federal Government, are by the
resident county where most of the information that we keep within our Newborn
Hearing is based on the birthing hospital.
And sometimes we’ve got one city that spans three counties and it gets
to be a mess. The information that we
get from the state lab is we’ve got their accession number and the form
number. We get the dates--the
data--what’s this, the data are--oh, we get the--that should be date. Oh no, the data is the final results from
the--each screen. That’s all we want to
get. We don’t want to get all the interim
things that they were testing for. We
get some demographic data on the mother and the baby; we get information on the
hospital and the doctor. In Colorado
it’s mandatory to have two screens, the second screen being done within eight
days and the second--when they--at the hospital, they give the mom the second
half of the first form and say, “When you go get your screen the second time,
take this form with you,” but it’s amazing how often that gets lost. So the second screen could have a different
number on it and it could also have a new doctor. So now we’ve got data coming in from two different places, what
do we need to do? First of all, because
it’s not clean data, we’re going to validate the data, so we’re going to try
and have a table and try and put them into the correct resident county right
away. We’ll still take the end-of-year
clean-up tape to make sure that we’re in synch with Vital Records. We have an un-duplicate routine which
consists of two things; it’s got a Soundex routine and it’s got a scoring
routine and those two things are what you’re interested in and we’ll get into
them a little bit more. We are going
to--once we have identified a unique new person--we’re going to assign them
that NEST personal identification number, which I told you about, which will be
the year plus sequential number. We
have to retain all the original EBC data because we’re not allowed to change
that and we want to retain and record all the original lab data because they’re
really the owners of that and if we’re going to pass on the information, we
want to make sure we pass on exactly what we receive from them. And we also need to record all the screening
results and all the different activities for each child. Okay, the Soundex routine. What the Soundex--this isn’t the complete
thing and if you are interested in the Soundex routine that we are going to be
using with our data in Colorado, I can give you a card or you can give me a
card and I’ll give you the complete Soundex routine, but this kind of gives you
an idea of what happens. If we look at
the top part on the first name, the Soundex routine says “Change all C’s to K’s
and it would do the same thing with some other letters that are sounding the
same; change all PH’s to F’s unless it’s the first letter of the person’s
name,” okay? And then you want to drop
all double letters, so if you had Lily, you would drop one of the L’s where
there’s two L’s together and then you want to drop all the vowels out and then
take the first three. So if you can see
down on the first column, we’ve got Kathy, Kathryn, Kathy, Kathy, Kathy, Kathy,
Kathy, all spelled different ways. Believe me, I know how often you can spell it or how many
different ways you can spell it, but when you look at the very end, they all
come out exactly the same way. Now Baby
Girl and Baby Boy would come out B. G. and B. B. on the other end anyway. The last name, we use the same thing
here. The only difference down here is
that we’re going to use four letters of the last name. Once we do that Soundex routine and we get a
key, the four character key for our last name and three character for the first
name, we’re going to put that together with other special demographic
information and create what we call a Soundex key. Now there’s actually going to be 20 different Soundex keys within
our system. The first Soundex key will
be made up of the person’s last name, first name, middle initial, date of
birth. If I match on that first key,
I’m pretty sure on the same one, but I’m also going to do another check and
check something else, like if I’ve got unique identifiers like the EBC
number. If I got EBC number coming in
on both pieces of information or the blood spot form number coming in, I’m
going to check those things also just to make sure that I’ve got the right
person. If I don’t match on that first
key, then I might throw out the day and just do it on the last name, first
name, middle initial and the month and year because it’s amazing how that day
can get messed up. And then once these
keys were actually for each person on the database, we will store a set of their
20 unique keys and then there’ll be key number one, this is the value; key
number two, this is the value. So when
somebody--a new set of information comes in, we generate those keys and then we
search the database just through the Soundex keys for possible matches. And then we do a scoring routine for each of
those possible matches and the fields--then we actually compare the real values
in there and we would compare the last name, the first name and all these
different kinds of things and we’ll actually come up with a score and what--right
now what we’ve come up with is if the scoring is between 97-100, after we go
through the scoring routine, that’s the same person. We’ll give them the same personal identification number. If it’s less than 55, we just toss out that
person because it’s not the same person.
If it falls in between, if we’ve got a fuzzy match, then that’s when
we’re going to have to have human intervention that will help to try and
determine and get more information to find out what’s going on. Okay once NEST PID has been assigned, then
we’re going to check--there’s going to be tables in there that are--that have
business rules that say, “If this kind of information comes in, this is what
you need to do,” and I just got my five minute sign, so I’m going to have to
run through these pretty fast. But
basically, what’s going to happen is let’s say we get some screening results
coming in, there’s a table in NEST that says, “This is a screening results,
this is for PKU. If the value that we
get from the lab is between these values, that’s borderline.” What do I do? I wait for the second screen.
If the second screen comes and it’s still borderline, I’ve got two
borderlines, I’m going to send that information off to IMD. They’re going to have to a do a follow-up
and diagnosis on that child. There are
five different kinds of activities that we’re going to record within the
NEST. We’re going to do screening
results, we’re going to do diagnoses, we’re going to do any communication or an
encounter that we have with that particular person or their family or on behalf
of them and we’re also going to keep track of immunizations and we’re going to
keep track of disclosures and authorizations, so we will know has the family
signed a form saying it’s okay for us to share this information. And then any time that we send that
information, like if we got information coming in from the lab and we send it
off to the IMD Clinic and to Sickle Cell and to Newborn Hearing, we will record
everybody that we send it to. So
according to HIPAA they can say, “Who's had my data?” we can produce that
report.
Unidentified Speaker:
(Inaudible).
Cathy Gunderson: Well, we’ve
actually got a form that we’re trying to encourage everybody to use, all the
different sub-specialties.
Unidentified Speaker: (Inaudible).
Cathy Gunderson: Well, that
would be nice, but we don’t do it at the hospital because it’s mandated by
Colorado law, so it’s not required there and then in HIPAA, it’s--there’s
nothing wrong with reporting that kind of stuff since it’s mandated to public
health, so it’s really not even needed in order to produce--to send that
information to us.
Unidentified Speaker:
(Inaudible).
Cathy Gunderson: Right,
right. Okay, once each of these
tables--there’s going to be a table for each of these activity types that help
us to determine the activity level, so an activity level of a normal blood spot
test would be one, which says it’s normal.
If it’s borderline, it will be two and if it’s a three that means that
it’s a presumed positive and some action needs to be taking place. And then based on the activity level that we
get from--and this tells you, this is like a Newborn Screen for PKU and you can
see over here we end up with an activity level over here and you can look
through these a little bit more, but once we find out based on the activity and
the activity level, then we’ve got a table within NEST that tells us what needs
to happen. So on a PKU screening of a
level three, we have to notify CRCSN, we have to notify IRIS, we have to notify
IMD, and this is a--kind of what the--that table looks like. The third step is that we actually have to
send the information out and it’s based on the activity type, the activity
level and the programs that are going to need to be notified and we have two
tables within NEST. There’s a
transaction send table and a transaction receive table and there should be a
blow-up of this also in there for you.
And what will happen is in NEST, we put everything that we want to go
out to any of the other agencies in our transaction send file and the same
thing’s going to be from CHIRP over here.
When somebody at CHIRP enters a diagnosis, then a transaction is going
to be put into CHIRP’s transaction send file and then when CHIRP makes
connection with NEST, we swap information and then NEST will process everything
that it got in transaction receive and CHIRP will do everything that it got in
transaction receive. If you’re
interested in this, we have one transaction defined that will handle
transactions going either way and I can provide that for you. The fourth step is now we want to be able to
communicate back and forth between all these sub-agencies. We’re going to do a lot of generation right
out of NEST depending on the data that we get in there, but we also want the facility
that if Sickle Cell wants to contact a patient that’s over in Fruita, Colorado,
which is way on the Utah border, they can say, “I want somebody from IRIS,
public health nurse, to go check up on this kid because we haven’t heard from
them for awhile.” They can actually
create a transaction, put it in transaction send that will go to NEST, NEST
will say this is from Sickle Cell going to IRIS. First of all, it will record it in the activity file that we’re
actually passing some information on, it will send that information on to IRIS,
IRIS will put it in the tickler box for the public health nurse, the public
health nurse will go visit the family, come back, enter the information into
IRIS, IRIS will recognize that that’s a response, send that information back to
NEST, NEST will say, “Oh, this is an answer to Sickle Cell,” and they’ll send
the answer back on the Sickle Cell. So
NEST is a router of information, so anybody who hooks onto the NEST, you can
communicate with everybody else. So
this kind of defines the ongoing communications. These things here are the actual types of communication that will
be going back and forth. The advantages
for being on the NEST is people won’t have to re-enter this data all the
time. When we know that there’s a--one
more minute--a child that has a hearing loss, we’ll send that--all the
information that we have. We will send
all the information that we got, the demographics that we got from the EBC
about the parents, the address and everything and we’ll also send the results
from the screening, so the Newborn Hearing follow-up person knows exactly what
needs to happen at that point. The same
thing will happen with any of the sub-specialties that we send information out. They don’t have to sit there and re-enter all
that information in. The other thing
that’s good about it is NEST can intercept a lot of requests and respond
directly out of there. Excuse me, our
Handicap Registry used--like I said, used to produce letters and send them
out. Now they will send a request to
NEST and NEST will know the last time that kid was seen, they will know if he
has that diagnosis and will be able to respond directly to him, which will cut
down a lot of the communication that’s going on and we also automatically keep
track of the communication based on different sweeps of the data. We are going to generate letters to help try
and track people down, people that we’re missing screening information
from. Okay, we’re at the summary. So these are the things that we did cover
through here. Are there any
questions? Is there any? Yes.
Unidentified Speaker:
(Inaudible).
Cathy Gunderson: How much is
it costing us? Well, the grant is,
what, $350,000 a year and we use it up.
But, what we have done is we have talked to CDC and asked them if it was
okay with them if we shared NEST and/or CHIRP with other states and they said
that they had no problem with that. So
if you’re interested in either NEST or CHIRP, send me an email. Yes, sir?
Unidentified Speaker: Are you
going to use this data, this ongoing (inaudible) for research? That is to say, keep track of trial from
birth throughout their life cycle?
(Inaudible) is that information generated to indicate what effects of
early childhood intervention program would be (inaudible)?
Cathy Gunderson: The data
will be there and available. It will
just depend on the state and federal regulations at the time, I think, about
how we could do that, but I think that that certainly will be a valuable
resource and it would be a shame not to use it that way.
Unidentified Speaker:
(Inaudible). There are some
responsibilities through early intervention (inaudible), but working
(inaudible).
Unidentified Speaker:
(Inaudible).
Bill Letson: Yeah, and
there’s potential, as well, to do EPI studies with it. Right now what we have is--most of what you
saw in CHIRP is actually at the University Of Colorado Health Sciences Center
and we’re getting consent for anyone who has a diagnosis that comes from the screening
process that ends up in this system, we’re actually getting formal consent
that’s gone through the IRB process at the University. The Health Department IRB, interestingly
enough, exempted the whole process, gave it a public health exemption. If we ever do EPI research, and especially
if it’s publishable, the University takes the point of view that that would
require special IRB approval, so each and every time we go to the well, we’ll
have to deal with the IRB.
Unidentified Speaker: IRB? I’m sorry?
Unidentified Speaker: The
Institutional Review Board. It’s
considered formal research by the University.
Not so much by the Health Department in our context, but since the
University is one of our multiple partners, which I was going to say something
about quickly here, we have to deal with that and we do anticipate doing EPI
research and using this as a surveillance tool.
Unidentified Speaker:
(Inaudible).
Unidentified Speaker: Actually, I
don’t envision that. We sort of see
part of the advantage in this whole thing is that it’s just sort of a marvelous
partnership and to try to--whoops, I can’t illustrate it that way, can I? Ah, geez?
Well, anyway, this is also in your handout. It’s kind of unreadable up here, but I was going to flip this up
just to give you an example and the University certainly is one partner that
you’re blind to on this org chart. This
org chart is just the Health Department, but CHIRP, in all those slides that
Kathy showed you, involves the University community and Children’s Hospital in
Denver and Colorado is fortunate in that we have only one large institution,
unlike New York, California, Texas, other states that are dealing with multiple
institutions. It’s a little simpler for
us, but there’s that partnership and I kind of wanted to re-emphasize what Kathy
Watters said at the very beginning.
This is really sort of a multiple partnership type of thing. This is the Health Department itself and, of
course, above that is the Governor and the Health Department is--some of you
have commissioners, it’s a Secretary, it’s a cabinet-level type of
position. We are actually in this
division of the Health Department, which encompasses your standard Title V sort
of stuff that most of you are involved in.
All of the things that Kathy described are under here in Children with
Special Healthcare needs under her.
We’ve got a huge other here that I think is rather interesting in our
case and it relates to some of this data integration. This other, our group of chronic disease functions and they’re
all in this Preventive Services Division, because the whole lot of it is
oriented towards prevention in some fashion and one of the things that we
dither about a lot in the arena of Children with Special Healthcare Needs is
transition and follow-up through adulthood and that gets another question that
you asked, “Do we intend to use this forever?” and take a big gulp and say,
“Yeah, we kind of do.” There are issues
about how to maintain this system.
Somebody was asking questions about all of the fiscal stuff. Right now it’s grant funded. You know, between Kathy and I, we’re sort of
committed to figuring out how to maintain that through the block, but honestly
we don’t quite have that figured out yet, but we have the potential to link with
a lot of other. We were talking about
obesity this morning. Well these folks
have an obesity function and we could, conceivably, have CHIRP modules that
follow childhood obesity and then connect them to similar types of things in
adulthood. There’s just huge potential
for integrating further and you can see here that when Cathy Gunderson was
talking about laboratory services, well that’s actually a division that’s
separate from us, but it communicates with us in several different ways. I’m going to redefine a term Cathy was
using, the term, I think, Handicap Registry?
You may be more familiar with it as a Birth Defects Registry. They both become politically incorrect terms
and that’s why we have this really weird name that we have to explain to
everybody. That’s actually in a
different division. The Birth Defects
Registry is, along with immunizations, is in the Disease Control Division and
so in this partnership, we’ve got partnering with the University and then
partnering with several different divisions within the Health Department and I
think that adds a lot of strength and, in addition, as Kathy said, here we have
IT people, epidemiologists and program folks all working pretty much together
and we’re dragging a few other people within the Health Department along with
us and we think those are strengths, including the bit with the University, in
our situation, at any rate. It can be
cumbersome if you’re dealing with University IRB’s, but we have our own
cumbersomeness and I just wanted to show this quickly. What this is really about is how we’ve
actually used differing funding sources to do this. Most of what Cathy Gunderson just described to you came from the
CDC EHDI project, integrates these screening systems I’ll show you in a moment. We’re developing an Immunization Registry,
it will also integrate that. A variety
of clinical databases and then the IRIS system that she was describing out in
the local health departments, that’s also integrated in that field case
management module. We have one of the
new Maternal Child Health Bureau genetics implementation grants, and that’s
being--really, it’s playing off of this whole integrated data system that
you’ve just seen and we’re going to be using it to assure long-term follow-up
and the presence or absence of a medical home for, initially, kids who have had
metabolic screening, a least selected birth defects. We’re picking cleft lip and palate to follow initially as a
model, some other genetic conditions including the kids with congenital hearing
loss, many of whom actually have genetic markers of non-syndromic congenital
hearing loss, about 50% of it is related to something called Connexon-26, so
we’re actually going to be able to do follow-up all the way to the medical home
with most of those kids. And what we’re
really thinking of this of, we can add other modules to this thing and we’re
building something--I, I’m not sure that Peter Van Dyke coined this term, but
maybe he did, we’re building a form of a child health profile and, in a way,
something that we’re seeing as a bit of a virtual medical home. We’re going to try and follow and track the
real medical home, but we’re trying to set up a virtual medical home and that’s
a bit of what this is about. Again,
Kathy showed you how the information flows from the hospital through the metabolic
screening laboratory into NEST, electronic birth certificate information
populates the Newborn Hearing Screening Registry, that goes through the
NEST. Then that information can come
out here to the clinical entities who will sent their own electronic chart up,
a portion of which can come back to us and if we need to follow a kid that
they’ve lost, say in cystic fibrosis, we can zing messages out to this case
management piece. A local public health
nurse, as Kathy explained, goes and finds them and then can zip information
back through the NEST all the way back to--well, our follow-up people here
centrally, but in addition to the clinicians at hospital. The other functions then here are the Birth
Defects Registry and there’s a data exchange there and finally a developing
Immunization Registry. I’m sorry, that
is not the final piece. The other piece
that really has intrigued me from the start of this is right here. We’re setting this up so that eventually we
want to set up a registry of primary care providers. If they’re on that registry and a mom walks in with her babe
that’s not been seen in the office before, they can get into this system and
scoop up newborn screening results as well as any immunization data on that kid
by virtue of being on the registry and there’s also a way, I guess, if they’re
not on the registry for them to register at that time with mom’s
authorization. There’s even the
possibility that we’re envisioning, of running information back and forth on
some of these special needs kids between the medical home and the sub-specialty
care givers electronically and that, you know, that’s a prospect that really
intrigues us. It could--I don’t know, I
am a clinician and I still practice and it is absolutely maddening to try to
get records for someone that you’ve never seen before. It takes months usually. This could have the ability to just short
circuit that whole thing and I think one of our big draws to get people into
this ultimately will be the Immunization Registry with the added benefit of
being able to see newborn screening results, which also don’t come back to the
primary care provider because usually they’ve got a doc that was a delivering
doc on them and I think that’s true in most states. So these are really the sorts of other things we see this doing
and I think we’re done, except for questions and anything Kathy has to
say. Yeah?
Unidentified Speaker:
(Inaudible).
Bill Letson Yeah.
Unidentified Speaker:
(Inaudible).