AMCHP 2005 ANNUAL CONFERENCE
DELIVERING RESULTS, IMPROVING PREGNANCY & BIRTH
February 19-23, 2005
CHAN MCDERMOTT: As you heard earlier, my name is Chan McDermott. This is my first AMCHP conference, so I'm very grateful to Sharon for inviting me because that's how I was able to finagle my way here, gave them a good reason.
And I do have a lot of slides, so if you're holding your packet and looking at your watch and getting worried, we are going to fly through them.
So to set the stage about Texas a little bit, at the end of 2000, we had about 10,000 women ages 13 to 49 who are living with HIV/AIDS within the State. This next slide is a little bit of an error. It says that there were 372,269 residents gave birth here. There were actually that many births. So you could have some multiples and things like that in there and this is using now 2002 data.
So of those babies born in 2002, we ended up with 391 exposed infants and ultimately 17 of those were confirmed HIV positive, 191 were confirmed HIV uninfected and 183 that were unconfirmed, which for the most part means that they were lost to us. And the general assumption, with the full recognition that this is an assumption, is that they were probably HIV uninfected because were they not, unless they moved out of state, of course, but were they not, we would have ultimately been able to reconnect with them. So using this data, what we came up with for 2002 was a perinatal transmission rate of 4.3 percent.
Now, Texas is a state that has opt out legislation, so what that legislation says is that pregnant women are tested at their first prenatal visit and at point of delivery for HIV, syphilis and Hepatitis B. And since it is opt out, if a woman refuses she is referred for anonymous testing. So in that case, she's lost to follow up, but she's still hopefully getting the information that she needs. And then printed materials are given on HIV, syphilis and Hepatitis B at the time of the testing.
One thing that is kind of interesting, when this legislation came out, there was quite a fair amount of infrastructure around HIV and not so much around Hepatitis B, and syphilis fell more into the HIV category. So what we have learned in the last couple of years, is that providers are very aware of this legislation as it regards HIV and syphilis and not as aware of it, it's the same legislation, it's one law, but they are not aware that Hepatitis B, the requirements, is also within that legislation.
This is an old slide and I'll update it, but in OB/GYNs, what they said was that 99 percent of them were offering the testing to all of their patients and most of them were saying that very few women refused the testing. And that was serving 617 providers. Now here is what our 2002 birth certificate data shows, that about 92 percent of the pregnant women did have an HIV test done prenatally. 85 had the test done again at delivery, and then I messed up my slides a bit here at the bottom, so there's another category in there which is that 79 percent were tested both prenatally and at delivery. So what that comes down with, the total is about 97 percent were tested. We know about 1.2 percent were not tested at all, and about 1.2 percent unknown. So even though that self-report slide is a little bit old and it does look like it pretty much jives with what our experience is. This is assuming you can trust our birth certificate data, and we do have some -- we are definitely looking at that because that has always been a question.
Okay. You heard a lot about the process that was part of the AMCHP action learning labs. We also participated. We participated in 2001, so our staff, we included on our travel team folks from the Bureau of Women's Health and from HIV-STD basically covering all those titles, representation from V, X, 19 and 20.
Texas is divided into 11 public health regions, so we also had a staff person from Region IV, V which is Tyler, which it's east Texas. It's an area of fairly highly prevalence in our state.
We also had as our ACOG represent and Title IV rep, a practicing physician and not all of these folks were covered by AMCHP, some of them were covered by Title X.
When we came back from the action learning lab and we created our home team, we ended up with about 22 people addressing lots and lots of different areas.
Now our state, like other areas, has undergone a lot of transition since 2001. In 2001, we were the Texas Department of Health. September 4, 2004, we became the Department of Health Services, those bureaus that I referred to earlier, they don't exist anymore. Now we are functionally organized. So you will occasionally sometimes see acronyms that don't always jive and that's an attempt to sort of highlight this transition.
But we did have people from the Health Department, different programs like case management and social work and WIC. We also had community based organizations like AHECK and Happy Start, and March of Dimes Texas-Oklahoma AIDS Education Training Center, that doesn't exist anymore either, and then we also brought in some representatives from other state agencies that we felt to be relevant.
And what's kind of interesting to note is, for example, the Texas Commission on Alcohol and Drug Abuse now is part of our agency. That's part of our whole consolidation and reorganization. In addition, we tried our best to have consumers and advocates. It was very difficult to work with consumers just because of the fact that our meetings had to be in Austin because that's where the largest group of our folks were and Texas is kind of a big state, and so getting from one city to another without funding and as a consumer with other obligations and also being HIV positive, so living with some of what that entails, made it very difficult to participate actively in our home team
We came up, we developed at our when we were in -- when we were at the first action learning lab, we came up with these three projects, and AMCHP tried to tell us they thought we were being overly ambitious, but because we were from Texas, we were pretty certain we could handle it. I think AMCHP maybe was right in the long run.
But basically what we looked at was data assessment and reorganization, developing a social marketing campaign, and also we wanted to develop what we call a providers consultation network. And that's the one that ultimately underwent the most evolution.
In that first project, what we really wanted to do was reorganize our existing data. Really come to know what data we had, what needs that data was needing and then what gaps were there. So what we did is we inventoried all of the data that was available to us. We developed an template so every data source we had we completed this template on the data source so we had a clear understanding of what need that data was fulfilling.
And we also developed a template of data summaries for those different public health reegions that I mentioned and also for the State as a whole and then distributed all of this information and made it available via our web site. So I'm not -- we identified ultimately 11 different data sources including PRAMS, including our birth certificate data, and I just have one quick example of one of them which is the survey of child bearing women. So the way the template was organized is at first you have the summary like you have at the top, and then the data fields, so we went through each of data fields, what were the demographics, to what degree was the mother or infant status known, where did the diagnosis occur, that kind of thing. All the way through these different data fields, and this was on each of our data sources, and then also a little summary on the strengths and the weaknesses of that data. So as I said, that was done for all 11 of the data sources we identified.
And then I mentioned those data summaries. In the past when I've given this talk like at other action learning labs, I brought a copy of the data summary. They are pretty long. They end up being about five pages for each of the regions plus there is one for the State as a whole, and they are all available on our web site. But basically the goal was to give the people in the region a good picture what was happening in the region regarding perinatal HIV transmission and also HIV status among women of child bearing age in their area. So all of that, as I said, we did complete the data inventory, the data source list and distributed that information.
And the way that was evaluated was basically process evaluation, did we complete those different deliverables.
Our social marketing campaign, the focus behind this was to focus on prenatal care in general. Encouraging women to get prenatal care because with the legislation there, she would be tested and from there if treatment was necessary, that would be initiated. So what we needed and these really are more activities than goals, but we needed to identify funding. With AMCHP's help, we were able to survey the existing campaigns. And Lois mentioned the fact that AMCHP has so many state-to-state resources, so we were able to find out what was happening in other states, what was happening in Puerto Rico that kind of thing. Then we designed a campaign, including an evaluation component, and then -- the remaining activities were implementing the campaign and completing that campaign evaluation and that's where things begin to breakdown a little bit.
We did actually do a large social marketing -- I'm sorry. We did some -- basic precampaign market research was completed, and we did have a group that we were working with. We had some funding that was identified, but because of so many of the changes in our state, we weren't really able to use that funding. Even though it existed, we couldn't show we were using funds for about an 18 month time period which slowed things down. The campaign was marketed -- the research was done primarily in Lufkin and in Harris County. And in Texas, I should have a picture of Texas, but I think you can kind of imagine what it looks like, HIV rates sort of follow the same trend in Texas as they do in most of the country. We talk about it as like a horseshoe, that you see the highest rates of prevalence up in the Dallas/Fort Worth area curving along the east Texas border which is the border it shares with Louisiana and curving back up into Harris County which is Houston. That's where we see the highest incidents. So we use Lufkin, which is more rural Texas, and Harris County. Houston which is, you know, a thriving metropolis.
So they develop three campaigns which they field tested using information from the focus groups, turned around and tested, and because of our lack of resources, it was going to be a booklet and maybe some billboards as opposed to big media like TV or radio or anything like that. So they came up with the Four Sisters, Four Stories: Sex, Pregnancy, HIV and more. I know it's kind of hard to read it's soulful straight talk from girls who want to share where they've been, who they trusted, what they are doing now. And you had four different stories; been there, done that, now what? So for a woman who basically had HIV, had a baby and where did it go from there. Living with HIV, looking forward to life. Hoping and coping with pregnancy. HIV and a baby due soon, taking the smart, strong path. So these were the four different stories, and then, you know, go on to give more information.
So for a long time, this whole thing was stalled and what's happened now is that funding has been identified that we can actually use and the campaign is completely designed and so work is resuming in terms of getting it out into the field.
And then ultimately, and I'm not sure to what degree funding is going to exist to do this evaluation, but the ideas that were discussed were tracking calls to referral hot lines to pilot markets during the pilot period, doing pre and post surveys and also targeting members of the audience market to see if they had seen the campaign if it made any impact on them.
Then our last thing, this is the thing that evolved the most was that we really wanted to do this consultation network. We have parts in the state, the parts where I kind of described that horseshoe, was we have providers who have a fair amount of experience treating individuals with HIV and treating pregnant individuals with HIV. But we have parts of the state where it's difficult to find a person with HIV much less a pregnant one. But we wanted to make sure if that happen that those providers may be in west Texas or south Texas would have a place they could go for information. We actually really wanted to help facilitate almost mentoring relationships. We wanted to identify this list of providers and then find out where the gaps were, where were the people without the knowledge. And then working with the Texas-Oklahoma AIDS Education Center trying to devise this mentoring relationship using the internet. And the whole goal was leading to telemedicine.
Ultimately what that became was provider information. We were able to complete that part, and then we surveyed our providers on the level of knowledge and the gaps of knowledge, and then working again with the Texas-Oklahoma AETC, we developed training to go to those providers.
We -- this partnership with Texas-Oklahoma AETC, that was actually a pre-existing contract so what we tried to do was build on to that contract to do this work. And as I said, we did survey providers and we did do the key informant interviews.
And we also did work with consumers during the focus groups and we analyzed the data and developed a list of barriers and strategies and we developed training, but we didn't take it to the next level of trying to develop the mentoring relationships. And there's big reason for that which I'll get to in a minute.
So a lot of this was completed and this was the evaluation plan for the original goal, which was the development of the barriers list, the issuing of the report and then making sure that all the performance measures were met in that contract.
But we took a little bit of a deviation here and we began to look at some of the other sources of funding. And so in 1999 when the CDC earmarked funds for perinatal HIV prevention activities, Texas received about 400,000 dollars. So in 2002, probably because of some of the work we had done identifying these, like Lufkin, Harris County, and that sort of thing, the funds were redistributed to providers in that part of Texas where we had the highest morbidity and the highest rates of HIV infection and potential for transmission.
So we identified three community based organizations which are doing HIV prevention and providing services. They receive the funding. They provide service like specialized case management, targeted intervention, also testing and counseling, education and even giving women incentives for going in for their prenatal visits and keeping their HIV medical appointments.
So what we basically did was we worked with these three groups. We took some of the work done in these other goals like the social marketing campaign when we weren't in a position to develop that social marketing campaign, we were able to give the precan research we had done to those groups, and they developed the social marketing campaigns. It's interesting because I know that -- I can remember from one of the focus groups, when they worked with consumers, there was a women who said, you mean they can prevent passing HIV on to the baby? And she said, they should tell the president. So, you know, this is this thing where there was so much ignorance that we found that providers and consumers didn't know about preventing, we were able to take that and like I said, give that information since we weren't able to use it, to give it back out to them.
And also, these three community based organizations do a lot of provider education themselves and I'll give you an example. There's also a lot of information sharing like I was talking about, sharing the results of that social marketing, and Texas-Oklahoma AETC service. So that these three community based organizations would have the information they needed coupled with those funds to really come up with some effective strategies.
So for example, one of those organization it's called the Triangle AIDS network. Here is an example of an educational opportunity they would offer. This lunch discussion on the topic of prenatal care and HIV prevention designed for physicians, pharmacists, nurse practitioners, and these three counties we identified, Jefferson, Hardin and Orange. They are right in the heart of our horseshoe, right where we do have the high incidents.
The other reason we didn't pursue the telemedicine and our whole mentoring idea is because there's not much point in reinventing the wheel or working toward doing something that somebody is already doing. So when this perinatal hot line which is the perinatal consultation referral service which gives us 24 hours clinical consultation, when that became available, it didn't make much sense for us to continue investing a lot of time, energy and funds trying to develop that when here was this nationwide opportunity right here.
So we definitely had had challenges. When we came back from the first action learning lab meeting and we were all excited and doing our home team, we rushed right into it and we said, we are having a meeting, we want you there, and it's this day. We didn't lay the ground work, we didn't stop and talk to the different partners and explain what we were trying to do and why we wanted them to be on it. And at our first meeting we mostly had us and maybe one or two of our home team people we were trying to invite. We started fresh and said, okay, that was our kick off to our kick off and now we'll go back and do it right and form a relationship with all these people first and then invite them to the meeting.
I mentioned some of the problems with consumer participation. Time was a real issue with us. That's a two part thing. One, all the people involved with this had full-time jobs they were already doing. The extra is I don't think Lois mentioned AMCHP wants you to do this work in six months. That was very, very hard for us. AMCHP was very relaxed about that, we ultimately had a lot more time. Shoot, we are still working on it. 2001, okay, three years, four years. But initially that was really perceived to be a big barrier.
Economic constraints. I have to tell you, I really didn't understand, I really thought we did not have the funding. It was just this year that I found out well actually we did have the funding we just couldn't use it because nobody could see us spending the money which I find incredibly frustrating. And then the administrative issues, simply the reconstruction or reorganization that we went through. But we've had some successes, we have made progress and even completed some of our three initial goals, although that one morphed quite a bit. We won the team spirit award which is basically given when lots of different people come together to work on one project.
And we definitely raised a lot of awareness within our agency and with our partnership agency that was involved. We raised awareness for partners and consumers, we developed some ongoing connections. We now have a lot more HIV SDT representation on specifically maternal and child health things, like on our committee and that sort of thing.
Here are some things we learned: Just make sure if you bring all these people in that the meeting is worth their time. Leverage resources whenever possible and really, really, the key is to stay in communication. I wanted to -- Well, we have reconnected since Sharon has invited us a couple of times to come back and talk to subsequent action learning labs, we really wanted to get our group back together. And what one of the outcomes of that was the desire to look at Rapid Testing in labor in Texas. We did participate in the meetings that Margaret was talking about and we tried very hard to have a Title V person at that meeting, it just came up too fast. But two hospitals or two parts of Texas were identified. Again Parkland -- actually Harris County and Parkland which is in Dallas. And it is the county hospital and it -- I'm not sure if this is mine or not. Actually it's not. It does about 16,000 births a year. But they do something called expedited testing where they feel confident that they can get the test results back before the mother leaves the hospital. So I think they participated, they listened, that sort of thing. They opted to continue with the expedited testing. But the Harris County hospitals are going to initiate rapid testing and it's moved very quickly since that meeting which I think was January 20, I think. They have developed protocols, the protocols have been sent out for review by all of us on the team, and they are moving steadily forward with it. So again, that's sort of an example of how because of the AMCHP learning lab, we formed this group that met that was able to come back together and push forward this idea and facilitate things for that hospital.
If you have any questions or want to find out more about any of the things I talked about, if you want to see the data summaries we have for the State and the regions, you can reach me -- actually I don't have the web site on there, but the web site is just basically if you took the Chan.McDermott @, off, the rest of that is the web site. Okay. Thank you. It's lunch time.