AMCHP 2005 ANNUAL CONFERENCE
DELIVERING RESULTS, IMPROVING PREGNANCY & BIRTH
February 19-23, 2005
TERESA BLAKE: As Susan pointed out, not everyone has Internet access, and as a rural state we can definitely attest to that.
But to start with our need, looking at the Tennessee genetics plan is where I want to start off. And in June of 2003, HRSA awarded the University of Tennessee and the Tennessee State Health Department a four‑year $1.2 million grant to implement the Tennessee Genetics Plan. And the purpose of this plan is to integrate newborn screening program with other genetic services into the information technology plan and to assure that adequate public health infrastructure and to coordinate these genetic services with all other programs for children with special healthcare needs. Basically, long‑term goal these kids are getting all the services they need.
Some of the numerous goals of this plan that I'll be touching on is, one, strengthening and expanding the newborn screening program. Two, increase and provide our understanding of the importance of timely and appropriate treatment of children with genetic conditions.
And three, empowering families to be effective advocates for appropriate care for their child with special healthcare needs. In working towards these goals, the Tennessee expanded the conditions screened for from about five in 2000 to approximately 40 conditions in early 2004.
How you count those conditions with tandem masspectrometry is another issue for another day. Just realize we expanded with tandem masspectrometry.
Now, when we look at our time line of how things worked, you can see there was a gradual step wise approach, PKU being the first one in 1968. Followed by hypothyroidism and hemoglobinopathies in the '80s and galacecemia then followed with congenital renal hyper plasia starting in 2000. From 2000 to 2004 there was a big boom in our state, starting with newborn hearing screening. And in 2003 we added biotinidase deficiency and then MCAD/MSUD and homocystenuria (ph) was added in 2004, January. And in April we expanded with other amino acid, organic acid and fatty oxidation disorders with tandem masspectrometry.
And then our goal was by July of 2004 to be universal with tandem masspectrometry. Realizing, of course, that multiplexing, we're going to be looking at cystic fibrosis. There's a meeting planned for all the key stakeholders in April to evaluate cystic fibrosis. And what we're looking at with this is, once again, looking at the specificity, the sensitivity of testing, the cost‑effectiveness, feasibility and also other state experiences. I think Tennessee has definitely ridden on coattails of Maryland as one of the states, of looking at how other states are expanding and we're hoping that other states can learn from our experience also.
Now, one of the things is we use our website for education purposes. A growing number of parents, when we find out that they have an abnormal newborn screening, go to the website. And so sometimes they can come across information that isn't the most accurate. And so we wanted a state website that would hopefully address some of these key issues and give proper information and quality information.
But, unfortunately, when you looked at our old website it consisted of one page and it had the two pamphlets, one for healthcare providers, and one for our parents and only in English.
This pamphlet is similar to Maryland 's in that it goes through the information and has an informed consent on the back. This is supposed to go in the medical chart, of course, when the child is born. But also as we know sometimes healthcare providers don't provide this information so we wanted another avenue for individuals to obtain it.
And, lastly, we had a citation on tandem masspectrometry, by the American College of Medical Genetics American Society Human Genetics Tests and Technology Committee.
Now, we didn't want to reinvent the wheel, so what started off was that the Statewide Genetics Coordinating Committee that works underneath the Tennessee Genetics Plan asked for an evaluation of other state websites. They said why do all the work over again. If there's a model out there that might fit our needs.
And as it turned out, you know, we had two evaluators attempt to do a qualitative assessment from September 2003 to October 2003, and it's key to pay attention to that date, because a lot of things change rapidly on the Internet.
And during this time frame we looked at their content, east of access and supplemental resources. Now, what we saw was that ten sites were inaccessible under construction or consolidated into one regional website. And then when we actually broke it down and we started looking at this, we saw that, you know, only nine of these 40 programs provided websites with ample quality information with ease of access. You think, geez, what were your standards on this qualitative assessment? Well, ample was more than one page. As far as ease of navigation, you know, it was kind of limited as far as that assessment concerning most of them were one page. And when we thought about quality information, we were looking for information that went a little bit more in depth than just a listing of the conditions being screened for.
The other thing that we found was that only five of these states provided supplemental resource links for consumers or healthcare providers. As we know when we serve the web we like for that web to keep going, to keep finding more information and we're the ones to decide when to stop obtaining information. But unfortunately a lot of these websites weren't doing that.
So with that information, we did have to kind of reinvent the wheel, not completely, but to a large extent. And so with the statewide genetics coordinating committee, under their direction, myself and some laboratory staff started developing new website materials, but one of the things that I want to point out is we went through multiple changes and evaluations, and review. Mainly by two major subcommittees the consumer involvement subcommittee, which kudos to them, they really helped us out a lot in determining what needs to be there.
Also, the professional education subcommittee, to evaluate the information once again for quality. And then once those two steps were taken, you still have to go through the loops that we all go through, and in that we saw that we had to approve through the Tennessee Genetic and Newborn Screening Program director, and also the director of Communications and Media Relations. Gotta make sure everything is PC. And then finally it went to our IT people to develop the website.
Now our website, what we're looking at, is it provides that brief explanation of our program in addition to the time line, because we want to impress upon people that we have made great strides and we're continuing to.
But also on the left of the screen was the navigation bar that sends individuals to more detailed information on the clinical genetic services in Tennessee . There's a parent and consumer section, a healthcare professional section, a summary of the Tennessee Genetics Plan and information on the Statewide Genetics Coordinating Committee.
For genetic services, what we were looking at was mainly providing people with contact information. When you get these abnormal screen results and your PCP has called you and told you that somebody will be calling you, some parents don't want to wait for that phone call, they'll be the ones contacting you, and we're fine with that. We've provided a list of centers in the state that provide clinical genetic services along with links to outreach clinics. Keep in mind as we deal with other disorders as far as endocrine. We also have listings of the pediatric criminologists, the hematology centers and we'll be adding audiologists.
Also in the parents and consumer sections we broke it down. The first section being these family lets that we provide to individuals. And one of the key things was from our consumer involvement subcommittee was newborn screening just isn't metabolic. It's also hearing. And so we want to find both of those things, even though they're separate programs in one location. And so with that, you know, we put both the metabolic screening in addition the hearing screening pamphlets, and we also made accessible the Spanish and English versions. This is a great resource for parents, but quite a few healthcare providers before they could order a new batch of provider pamphlets, they download what they need to get them through until their mailing is received. Also we have condition summaries with specific condition resources.
So what we're looking at, we haven't done all of them. This is a step‑wise approach. We started with the core nine. And then we did some general summaries for amino disorders, organic and fatty oxidation. But one of the things we did want to try and do was provide a hyperlink glossary, so as a parent is going through this material, if they don't understand possibly some of the more technical words, they can hyperlink to a definition. But also with some of those additional resources that were very specific to that condition. If they're available out there we want people to know that they're not alone.
And then we provided local resources as far as the state of Tennessee and national resources. And we were limited in how many we could list. Right now we have about 15 on the parent and consumer. Some of those include Family Voices of Tennessee, Tennessee Family Pathfinder, the Tennessee Early Intervention System. But national resources like the Genetic Alliance, Gene Test, My baby's Hearing, those types of information.
We also have a section for healthcare providers. And once again we go back to those pamphlets. It's a similar breakdown. But one of the things is the guide for practitioners kind of gives the laws, the mandates, the rules and regulations the responsibility of the institution, the PCP and the state but also hearing loss education. Why is the hearing screening important. It may not be mandated but it is something that we hold in high regard in Tennessee .
Also we did condition information. But here for condition information, we have two versions. A quick fact sheet, which is just a summary of some of the symptoms, the incidents, the anolyte measured, the normal/abnormal range, possible treatment options and confirmatory testing. If a provider wants to go into it in more depth, there are more in depth condition summaries from medical providers at our major genetic centers and endocrine centers.
Also, once again, those helpful resources outside of our website. Focusing on newborn screening, continuing education and, in general, genetic resources. And, of course, just some of the key things, places where you can find more resources. We don't want them to dead end. We want to go to broad general sites that provide quality information and additional resources for individuals.
The last two navigation buttons on the left of the screen are the summary of the Tennessee Genetics Plan, so that hopefully people realize that what we're doing and what our goals are, and then also a listing of the statewide genetics coordinating committee member and working subcommittees. Once you get people to realize they can get involved, we have a very strong consumer involvement subcommittee.
Lessons learned: It's one of those things. Determine your specific resources and limitations. Realizing that there are things that you're going to have to work within. Certain structure for the website. Also limitations on what information you may be able to provide. For instance, our hyperlinks outside of our website can only go to non for profit organizations. Also we were limited on how many hyperlinks we could put on there, because our IT people were very concerned about keeping this website up‑to‑date.
We had to make the promise that our staff would check these links once a month so a parent doesn't get frustrated when they find something that isn't there any longer.
Also, realizing it takes time to create a comprehensive website. It's not going to happen overnight. Then involving parents and consumers in the development and evaluation. We were going to do a whole website with all the information in one location, but our parents said break it down into two separate things. Don't overwhelm us. A parent and consumer section. Let somebody decide I'll start there, and if they're looking for more information maybe, then they can go on to possibly the more challenging information from the health care provider's perspective. Also breaking up the text with pictures, clip art, et cetera, but realizing your IT department is also going to say, wait, we gotta strike a balance because we don't want the upload time taking too long for these websites. The average consumer going through web pages isn't going to wait more than two seconds for a page to load.
Future directions. We're hoping to add a suggestion section, so if somebody doesn't find something they're wanting, maybe they can e‑mail us and let us know up front this is something we would consider changing. Also additional conditional summaries and fact sheets. Since we're at 40 plus conditions, we need to add more definition summaries. It's going to be an evaluation process, once again through the consumer involvement subcommittee and the healthcare professional subcommittee.
Also, we have the pediatric audiology assessment amplification guidelines coming out. So those are going to be posted soon on our website. And we've had healthcare providers request, sometimes I can't come to the lecture that you provide at the local health department. Is there a way for us to obtain this information and continuing education credits on the website. And ultimately we want to expand to language versions, not just the resources on the website being translated but the whole website. Possibly first being in Spanish, then evaluating the need because Tennessee does have a Kurdish population and Korean population that needs to be served also.
But lastly I wanted to thank the members of the statewide genetics coordinating committee, the staff of the Tennessee Department of Health and the support for this grant and our principal investigator that kind of is the ring master of our three‑ring circus trying to take care of all of these things. But I'll turn it over to Michelle so we can now open up the floor.