American Health Information Community
Population Health and Clinical Care Connections Workgroup #25
Thursday, April 3, 2008

Disclaimer
The views expressed in written conference materials or publications and by speakers and moderators at HHS-sponsored conferences do not necessarily reflect the official policies of HHS; nor does mention of trade names, commercial practices, or organizations imply endorsement by the U.S. Government.

>> Judy Sparrow:

Good afternoon, and welcome, everybody, to the 25th meeting of the Population Health and Clinical Care Connections Workgroup. Just a reminder that this is a Federal Advisory Committee, which means it is operating in the public and being broadcast over the Internet, and there will be an opportunity at the close of the meeting for the public to make comments. Workgroup members, please identify yourselves when speaking, and also remember to mute your phone lines when you’re not speaking.

Today on the phone, we have one of the Co-chairs, John Lumpkin from the Robert Wood Johnson Foundation. We have Shu McGarvey from the Centers for Disease Control, Art Davidson from Denver Public Health, Amy Helwig from AHRQ, Lisa Rovin from the Food and Drug Administration, Paula Soper, Elaine Lowery from the Colorado Department of Public Health, Shu McGarvey I think I mentioned your name. And did I miss anybody on the line?

>> Laura Rosas:

Laura Rosas, New York City Department of Health and Mental Hygiene.

>> Judy Sparrow:

Okay, great. Good.

>> Christopher Kus:

Chris Kus and Marilyn Kacica from New York State Department of Health.

>> Judy Sparrow:

Right.

>> :

Do you want the presenters to...?

>> Judy Sparrow:

Yeah, and then we do have a number of presenters. We have Michele Lloyd-Puryear from HRSA, Chris Wells, Marilyn Kacica, Christopher Kus, Amy Metroka from the Citywide Immunization Registry, Marcus Cheatham from the Ingham County Health Department. Anybody else? (Pause) Okay. With that, I’ll turn it over to Dr.Lumpkin.

>> John Lumpkin:

Thank you, and welcome to our April meeting of the Population Health Clinical Care Connections Workgroup. We have a fairly full agenda, so we need to move on to that. Our goals today are to receive an update on the AHIC transition, which will have some significance to our work today, as well as in the first part, where we look at maternal and child health issues. We’re going to receive some input on MCH and have some discussion on possible advancements using health information technology. And then we’re going to begin to talk about a potential outline for our recommendation and the process as we look to the work plans look to finish up our activities as we address the issue of population health during the transition from AHIC 1.0 to 2.0. So with that, let me turn it over to Kelly, to give us an update.

>> Kelly Cronin:

Okay. Thanks, John. If there are some people on the phone who probably haven’t been tracking what AHIC has been all about, it might be good just to start with some context about why we’re considering a transition to another organization. AHIC, obviously, is a Federal Advisory Committee that is chaired by Secretary Leavitt. And over the last 2½, 3 years, we’ve been able to advance a lot of important topics and recommendations specific to biosurveillance and population health more broadly. And as a Workgroup, we’ve advanced a lot of specific priorities that have helped make sure that specific public health priorities have been advanced in the overall national agenda, particularly with efforts related to interoperabilities, the standards harmonization and certification of health IT products, and then actually demonstrating through networking, through the Nationwide Health Information Network, we’ve been able to make good progress in incorporating public health priorities in all of those activities.

But it’s been recognized, from the start of this whole effort, that a Federal Advisory Committee can only go so far. And so much of what we’re doing across the health care and public health space requires multistakeholder participation both in the public and private sector, since there are so many interdependencies and we have such a complex system. And early on, we really did want to be establishing a public-private partnership that could be providing some governance to this whole process, and not only in priority setting, but also in overseeing how everything is coming together over time.

So by transitioning our Federal Advisory Committee to an effort that would be outside of government but still very much have government at the table, we’d have a public-private partnership that would allow for representation of all important stakeholders across the public and private sector, both at a membership level and at a board level, so that decisions could be made that reflect everyone’s interest. So that right now, the process to get that started is through a cooperative agreement with an organization, LMI, that’s partnering with the Brookings Institution. And they are convening a series of public meetings and also convening four planning groups to actually stand up what they’re calling AHIC 2.0, or sometimes A2 for short. And of course, this is going to develop a new name and have its own identity when it really gets established.

But over the next 8 weeks or so, there’s going to be some real heavy lifting across these four planning groups, one around governance. So what does the board look like? What are the attributes of the organization, in terms of organizational design? You know, how will the members relate to the board? What might voting processes look like? How are everyone’s interests taken into account and reflected in these various levels of decisions?

So they’ll be tackling sort of the all the governance pieces and the documents that will have to come out of that, like and articles of incorporation or organizational charts, staffing plans you know, sort of the nuts and bolts of getting this organization set up as a new legal entity by June. And that effort will be chaired by Dr.John Tooker, who’s been really involved in the e-health space for quite some time. He’s from the American College of Physicians, but he was the past President of the e-Health Initiative. He’s on the board of the Certification Commission for Health IT and has really been a strong advocate in general for health IT.

I should also mention that public health will be represented probably at two different levels. And these notifications of who are going to be the members of on these planning groups are just going out yesterday and today. This is all sort of very new, and they’re forming very rapidly, because there’s a very aggressive time frame, but they need to put their documents and their work together. But Les Lenert, who is one of our Co-chairs for this Workgroup, will be representing the federal side of that. And then there should be at least one representative at a state level.

So the after out of the four planning groups, one’s focused on governance. Another one’s focused on membership. And they’ll be contemplating both, you know, “How do you make sure that there’s fair representation across stakeholders?”, but also, “How do you make sure that, if it is going to be a membership organization that you have broad participation across all of these types of stakeholders so that, when we do get down to establishing a formal governance process that we can make sure that all these interests are formally and appropriately represented?”

And then there’ll also be, you know, a marketing plan, an outreach plan that’ll have to be involved with that, since right now, you know, there’s a pretty strong health IT community and more and more engagement across communities across the countries and at a state level and at a federal and national level, but we need to be taking it really beyond the health IT community as we as this organization becomes rolled out.

Then the third group will be focused on business sustainability and really trying to figure out, “Well, how will this organization thrive over time? What will be its revenue sources? What might be expected in the way of membership fees? How might else it might raise money over time?” And there’ll probably be various things contemplated. Things have been already speculated in the past, like, “If we do eventually have a robust set of networks and that are all interconnected, could there be some kinds of transaction fees that might be generated over time, since it’s contemplated that there might be some formal governance role over these network services that this organization might play?”

And then the fourth group will be focused on transitioning, really taking all of our current activity, thinking across all seven workgroups across AHIC, along with the Health IT Standards Panel that’s doing the standards harmonization work that’s already a public-private group involving close to 500 organizations, the Certification Commission, and the evolving NHIN; and figuring out how all those activities are going to be related to or linked to or, in some cases, perhaps become explicitly part of this new entity.

So that work will probably take a little bit longer than 8 weeks, and we expect a lot of the transitioning to start this fall. So their heavy lifting will start in the next 8 weeks, but they may take a little bit longer, given that the transitioning is going to be evolutionary.

So we have two public meetings coming up that LMI and Brookings are convening. Next Tuesday on the 8th is the next public meeting that be held at the Brookings Institution here in Washington, and you’re all welcome to attend or listen in if you have the time or interest. There’ll also be planning group meetings before and after that public meeting. And then this following public meeting, where a lot of the output of these planning groups will be presented, will be May 30. So that’s for the next big date, where there’ll be a lot of discussion around what’s produced.

So with that, I think that’s probably enough of an update. And if there are any questions, I’d be happy to answer. But as John said, we have a really packed agenda today, so I don’t want to take up too much time.

>> John Lumpkin:

Okay, are there any questions? (Pause) Thank you, Kelly. We’re going to go back to this a little bit when we talk about some of the future work for the Workgroup in the coming period of time. So we will come back to that a little bit later in the call.

At this point, we’re going to begin with the presentations. The agenda is printed, and we’re going to start off with Michele Lloyd-Puryear?

>> Michele Lloyd-Puryear:

Yes.

>> John Lumpkin:

Wow. She was the Chief of Genetic Services Branch of the Division of Services for Children with Special Health Needs, MCH Bureau, at HRSA.

>> Michele Lloyd-Puryear:

So should I begin?

>> John Lumpkin:

Please.

>> Michele Lloyd-Puryear:

Good afternoon, everybody. I was asked to briefly outline some of the Maternal and Child Health Bureau health information technology activities. We have primarily funded activities to enhance or facilitate the flow of information to improve quality of care, specifically in the realm of newborn screening and health systems infrastructure, combining both the public health and health care systems. Do I need to say “next slide” all the time? I haven’t gotten

>> Kelly Cronin:

Not yet.

>> Michele Lloyd-Puryear:

Okay, so next slide, please.

>> :

Do you see a slide?

>> John Lumpkin:

Yes. And for all of the speakers, if you are speaking while you’re looking online, there is a slight delay.

>> Michele Lloyd-Puryear:

Okay. So this next diagram is sort of simplistic, but it we wanted it to speak to the need for a health system, not just a health care system, so that you see that there’s a need for both public health authorities and health care systems to be partners in the overall health system. Both sectors are looking to electronic health records and better use of information technologies to improve to fuel improvements and efficiency and to impact their work. The public health community’s interest in integrated information is part of an effort by the we feel, by the entire health sector to move more decisively into the computer age. Health care health systems, hospitals, and individual providers increasingly are investing in this, as we all know, but we want to urge AHIC to continue to work under the concept of building health information networks that serve both clinical medicine and public health and move these into one coordinated framework. So I’m going to begin with that. Next slide, please.

A little bit of background about newborn screening. Dr.Robert Guthrie’s development in the early 1960s of a simple test for screening large populations for PKU marked the beginning of universally accepted population-based newborn and genetic screening programs and certainly signaled the integration of genetic testing into public health. Since that time, we now have about 4.2 million infants being screened through public health-mandated newborn screening programs to detect congenital and other and genetic conditions that may threaten their life or long-term health. It’s believed that early detection and treatment of these conditions may prevent a child’s death or serious illness or disability. Next slide, please.

And just for the audience or those who may not know, the term is used to refer to two different programs that may or may not have linkages with each other within the state public health program. That’s the traditional dry bloodspot biochemical screening for largely inherited but congenital conditions in general metabolic, endocrine, or hematologic and then also screening for congenital hearing loss. Next slide, please.

And this shows the chaos of what a system may be, where you have a bunch of component parts operating independently. The newborn screening community feels that it’s a system that consists of six component parts and that these parts must fit together and you can go on to the next slide or intersect to form a seamless newborn screening system, like this. And there are critical junctures between system components, where responsibilities and coordinated activities must be seamless and nonduplicative. So you’re going from screening to follow-up to diagnosis to management and evaluation. And this cuts across the public health system and the health care delivery system.

And if you go on to the next slide, you can see a more linear illustration of how information could flow from screening to confirmatory testing, handoff to a medical specialist and doing short-term follow-up and then on into long-term follow-up, and then branching off into management and data collection and evaluation. And go on to the next slide.

Because I think people don’t always see things the same way, linearly, this gives a more dynamic view of the kinds of interactions, at least around screening the screening component of newborn screening. And a lotof you can see a lot of complex interactions, both in and out of the public health and health care delivery system. So it’s unique in that it cuts across two entities that often operate independently, and we thought it was an important challenge to focus on this arena. Next slide, please.

So that for instance, looking at the minimal information flow that needs to go between participants, the newborn screening program would report to providers the screening test results, which would could consist of the analyze analyte levels, reference ranges but you also may have providers accessing newborn screening results via Web-based technology, and then the diagnostic providers reporting back to the newborn screening program, or to primary care directly, both laboratory diagnostic information and also clinical information. Next slide, please.

But when we took a look at this, this whole system, we saw that the lack of an integrative approach to communication practices between the public health programs and between public and private stakeholders illustrates the point that was made by the Institute of Medicine: that the current care delivery system in the United States often consists of silos and often lacks rudimentary information exchange capacity for patient information or to coordinate care across settings, and coordinate care between multiple providers, and ensure continuity of care over time. And you saw or we saw a lot of duplication of effort with increased cost, certainly burden on families, burden on health care professionals, and a lot of redundancy in data management systems.

And for newborn screening specifically, we thought that newborn screening programs rested on an implied partnership between state public health programs and the community-based systems of care. And we could use that implied partnership to build what we saw as child health information systems with a focus of building a child health profile. And that began our early concept in 1999 of where we were going to go over the next few years.

And this child health profile was to develop a unified record on every child to capture accurate information, support decision-making, and support program needs. And the integrating the information systems would allow access to complete and accurate information about a child, no matter what setting you were in. And from there, the goal was or the overall vision is that through this facilitation of communication, you could improve a child’s health, both children within the community or children individually within your practice. And we began with planning grants and moved on to implementation grants. Can you go on to the next slide, please?

Planning grants began in 1999 and moved through a 3-year cycle and then moved on to actual implementation grants. And at the towards the end or middle of that period, we also began with began a cooperative agreement with what’s now known as Public Health Informatics Institute. I was familiar with them because of their activity with under All Kids Count within immunization registries and thought that that effort should be brought to newborn screening. And we also, around that time also began a cooperative agreement with the National Newborn Screening and Genetic Resource Center to create a large data repository of for newborn screening data and then, more recently, began the regional newborn screening and genetic service collaborative and, with them, last year, began three long-term follow-up and tracking projects in three different regions. Go on to the next slide, please.

But what I was specifically asked to sort of introduce and focus on is our work with Public Health Informatics Institute, and the Connections Community of Practice. And you’re going to be hearing about some of the projects that have been involved with this activity. Continue on, please.

The staff saw Connections, both at PHII& NCHP staff, as a means of bringing states and communities together to share their experience and knowledge on a peer-to-peer basis and to identify best practices and data integration. Connections, we thought, provided a trusted learning environment to encourage stakeholders to share their failures as well as their successes. And AKC All Kids Count and PHII had used Connections successfully, that model, under funding they had received from Robert Wood Johnson, with their immunization activities. So it was a successful way of working with a collaborative group. Andyou can go on to the next slide, please.

This shows the states that have been involved. And go on to the next slide, please. Connections operates under the what’s called the community of practice. It’s not unique to Connections. It’s a methodology that’s used throughout industry. And it’s groups of people come together to who share a concern or a set of problems or particular passion about a topic. And they deepen their knowledge and expertise in this arena by interacting in an ongoing basis. Go on to the next slide.

Communities of practice have been successful when dealing with many complex issues, generally issues where there is no simple formula for success. It relies on the understanding that there is tacit knowledge that everyone shares and is getting at that and getting at those experiences in a productive way and allowing that sharing to come to evolve into solutions. Go on, please.

And these are some of the lessons that have been learned over the years that just to give you an idea of data are for sharing. They’re assets to share among programs. Communication’s critical with all stakeholders. Change is hard. This is a very important thing to learn. Change management strategies to mitigate this challenge increase a likelihood of success. Public health and clinical needs must drive technology and not the opposite. Often, we allow information technology to drive program needs, and we had to enforce over and over again that program needs need to drive the technology and to stay the course that this was going to be a slow process, but if we worked in a methodical manner, we could be productive.

And just to give you a sense, before the others speak, of some of the products that have come out of the Community of Practice, I’d like to just point them out on the next few slides. Go on, please. So we had we’ve developed a source book for planning and development, a tool for assessment and planning, a framework for integrating child health information systems, a business case was developed, and a unique records portfolio. And I’m going to show you these on the next few slides, but they’re all available on the PHII Web site. So the first product came out was the integration of newborn screening and genetic service systems. And this is for a tool for assessment and planning. And it helped participants to ask questions and to develop solutions. Next slide, please.

And then the Community of Practice then developed a framework for integrating child health information systems and defined what the principles and core functions and performance measures should be. And then a very valuable product I think one of the most valuable that has come out of this is the unique records portfolio, to define who am I, who needs to understand. And it’s been very useful to around the area of de-duplication. And next.

And then we’ve also developed a business case model, and this is currently being tested field tested, because that’s at a high level of use. But it’s a tool. It was developed as a tool to calculate the specific benefits and costs of integrating child health information systems.

And I think that’s it. So if I went quickly through this so that we could spend time on the other projects, but if anyone has any questions, I can take them now.

>> John Lumpkin:

Thanks. Why don’t we take the questions after we hear from Christopher Kus, and then we’ll take questions on this particular section?

>> Michele Lloyd-Puryear:

Okay. I just have to say, I have an all-hands meeting that I have to leave to for at 2:00 p.m.

>> John Lumpkin:

At 2:00 p.m., I think we should be done with Christopher by that time.

>> Michele Lloyd-Puryear:

Okay, thanks.

>> John Lumpkin:

Christopher Dr.Kus, is a pediatric director at the Division of Family Health, the New York State Department of Health.

>> Christopher Kus:

Yes. And I can be fairly brief, because I think if there’s any questions, it’d be helpful. And this is really a follow-up. Last at the last call, I talked about the Association of Maternal and Child Health Programs. And it really is a partner. This is the organization next slide this is the organization that represents the state MCH professionals, and we partner with the federal Maternal and Child Health Bureau, which gives us a Maternal and Child Health Block Grant. And so Mich we work with Michele’s group, particularly in the area of newborn screening. But the Association of Maternal and Child Health Programs is the national organization representing state public health leaders and other interested individuals and organizations working to improve the health and well being of women, children, youth, and families, including those with special health care needs. Next slide.

It is a it’s a national membership organization based in Washington, DC. The delegates of the organization are state Title V maternal and child health professionals and children and youth with special health care needs directors. And we have family delegates. The importance of family-centered care is infused in our work, so family delegates are involved on the policymaking level as we go through our programs. Next slide.

The vision of the organization is healthy children, healthy families, and healthy communities. Next slide. And really, the mission of the organization is to support state maternal and child state maternal and child health programs and provide national leadership issues affecting women and children. Next slide. In terms of the current focus areas of the organization, they are early childhood development, women’s preventive health, adolescent preventive health, emotional behavioral health, children with special health care needs, and health equity. Next slide.

But I think one of the important roles of the state maternal and child health program is to report on the status of the maternal and child health population and that the discussion of an integrated child health data profile and further discussions really are important tools in the work that we are to do. And interestingly enough, I was using the newborn screening as an area to talk about how the Association of Maternal and Child Health Programs kind of identifies areas that states are interested in. And hearing Michele’s discussion, what we given that there has been the expansion of newborn screening, i.e., more tests and probably more tests to come, the importance of knowing what happens to children who receive treatment after they’re identified is critical. And what we’ve found out, and which we kind of knew, is, that data system has really not been developed. And in fact, the programs that follow children who have been diagnosed with a newborn disorder generally are in children with special health care needs programs or are connected to them, but there really isn’t any data.

So one of the things that is of concern is, when you’re reporting on we do fund a newborn screening program, well, what’s the outcome relative to children? We think it’s pretty good, but the other concern is that some of the conditions we’re testing for now, we don’t have a long-term experience with. So in a way, we’re not sure what’s happening, and we’re trying to develop a system that would allow us to do continuing improvement in terms of care.

So that’s why the organization put together a paper on newborn screening, long-term follow-up next slide because in the discussion we were having, the people when people talked about follow-up in newborn screening, they generally meant that you got the child to somebody to care for them after they’ve been identified. So one of the things we talked about is to say, “Let’s spend some time thinking about long-term follow-up, and also, what kind of data needs do you need in that area?” So the basic components of long-term follow-up were defined as assuring that ongoing high-quality medical management are provided within the context of a medical home; assuring transition of young adults to appropriate medical care next slide periodically assessing patient progress through review of defined outcome indicators; collecting and analyzing state long-term follow-up data; and engaging in continuous quality improvement at the local, state, and national levels. And to really get into this system, it really does point to the importance of the connection between public health and clinical care, because the children that are being cared for are being cared for by some specialty providers in the community. And unless we have a connection and a data connection, it would be hard to figure out what are those outcomes.

When we looked at what current state long-term follow-up activities were, states are mostly engaged in the first component of long-term follow-up: assuring high-quality medical management and care coordination. The level of clinical tracking varies greatly for each disorder category, but there are somedis there are some programs that are looking at developing systems for specific conditions. Some of that results from funding through the Maternal and Child Health Bureau Division the Genetic Services Branch. And then states have experimented with innovative approaches to long-term follow-up, particularly when dedicated federal funding has been available. Next slide.

The challenges and this I’m talking specifically about long-term follow-up by far the biggest challenges facing those who wish to strengthen long-term follow-up systems are the low priority accorded to long-term follow-ups, so even getting people to think about it. It was very clear when there was legislation discussed and you heard the politicians discuss the importance of newborn screening. They talked about the test. And that was and the test is one thing, but then the ongoing follow-up for families and the information needs, which often falls to public health, is the other aspect. There’s a l there’s also compared to other newborn screening activities, there’s an associated scarcity of resources. And in fact, we’re talking about developing systems where there aren’t resources right now.

We thought it was an opportune time to look at this, because the American College of Medical Genetics report which talked about the newborn screening and talked about having a standardized panel across the country was taking place, and there’s the Secretary’s advisory group that’s working on this. There were ongoing projects: the regional genetics collaboratives, which Michele mentioned; and then the discussion here about uniform core datasets, building on existing data systems I think we’re going to hear about the you know, the data linkage thing between immunization and newborn screening is one of the things that’s being looked at. Next slide.

So our recommendations were that we needed to, like always, secure funding for long-term follow-up, develop standards for data collection related to newborn screening long-term follow-up, provide resources and technical assistance to states as they develop long-term follow-up activities next.

And that’s it (laugh). So I’m and I’ve listed here the AMCHP Web site. And on the AMCHP Web site, you can get a copy of the report relative to long-term follow-up. And I know that there’s going to be a report coming out from the Secretary’s advisory group specifically about the area of long-term follow-up and the importance of data collection and integration. Thanks.

>> John Lumpkin:

Thank you. So do we have any questions of Dr.Lloyd-Puryear or Dr.Kus related to child health the components that were discussed related to newborn screening and other activities of both HRSA and AMCHP?

>> Michele Lloyd-Puryear:

You should know and I assume you do, because you’re a part of AHIC, but maybe you don’t that a use case in newborn screening has been proposed. Were you guys aware of that?

>> Kelly Cronin:

Yes, we actually have been working closely with Personalized Health Care Workgroup

>> Michele Lloyd-Puryear:

Okay. I just wanted to make sure.

>> Kelly Cronin:

Yeah, we’ve also heard from them at one of our one or two of our previous meetings. So yeah, that’s part I think our Workgroup’s focus has been a little bit broader than theirs, but since their primary interest is genetic tests, they were advancing that specific issue.

>> Michele Lloyd-Puryear:

Okay. I just wanted to make sure that because I presented a very narrow aspect of what it is we’re doing or involved in.

>> John Lumpkin:

Well, I think the question that would be begged to be asked and not necessarily the two presenters, but we can put this as a parking lot is, just as we looked at case reporting as being a vehicle for other ways ofinformation from the clinical record and to various surveillance systems, to what extent do we see the use case on genetic testing as being a vehicle to look at the movement of data from a newborn screening registry into the clinical record and back and forth?

>> Michele Lloyd-Puryear:

That’s not for Chris and I, right? That’s for your members.

>> John Lumpkin:

Right. That’ll be for us, and I think that, you know, looking at that recommendation or perhaps suggesting to AHIC that that when they look at that use case, that they sort of look at it within the context of the broader issue.

>> Christopher Kus:

Absolutely, I think that’s critical. It’s Chris.

>> John Lumpkin:

Any other questions from Workgroup members? (Pause) Well, thank you very much. And Michelle, I hope you have a productive meeting (laugh).

>> Kelly Cronin:

Actually, (inaudible) and John, I wanted to pose a quick question to Chris. Since New York has so much activity going on in both in New York City, but also across the state now, in funding community-level and regional health information exchange with long-term follow-up, has there been any contemplation about how you might leverage the infrastructure that’s being funded now by the state that will hopefully come together in sort of an interoperable set of networks? Is that part of your planning and part of what you’ve been contemplating?

>> Christopher Kus:

I’m referring this to Dr.Kacica, who’s on the line.

>> Marilyn Kacica:

And in fact, we have begun discussions with newborn screening as and I talk a little bit about that regional planning and the Health Information Technology Transformation Group and what their vision is, also, in my presentation. So I can sort of address that a little bit then.

>> Kelly Cronin:

Great. Okay, thank you.

>> John Lumpkin:

Okay. With no further questions, we’re going to now look at the Connections in the Community of Practice from the Public Health Informatics Institute. We’re going to hear from Marilyn Kacia

>> Marilyn Kacica:

Kacica.

>> John Lumpkin:

Kacica thank you Medical Director, Division of Family Health at the New York State Health Department; Chris Wells, Director of Public Health Informatics Unit from Colorado Department of Public Health and Environment; and Amy Metroka from Director of Citywide Immunization Registry; at Angel and Angel Aponte, computer specialist at the New York Department of Health and Mental Hygiene. So why don’t we start off with Marilyn?

>> Marilyn Kacica:

Okay. And my presentation will be somewhat of an overview at the beginning. And then the second half Michael Flynn will be presenting on our immunization registry, which is also working with the Connections Workgroup and is really a very functional part now of our integration efforts. So next slide.

The objectives I want to tell you a little bit about the maternal and child health data systems that we currently have, who our users are, what the barriers are to integration, a little bit about our planning process, and then inform you a little bit about the statewide health information technology efforts. And then, as I said, Mike will talk about the immunization program. Next slide.

The vision that we have for the child health information integration effort is that it’s very much bidirectional. We want to make sure that the physician gets the information that he needs to deal with a patient but that public health is also involved in these efforts, so that we can supply information, but we can also learn from the information and then look at health trends and see what types of interventions we can participate in.

So as far as what’s interesting to a physician, the things that we are looking at are immunizations, the lead program, newborn screening, WIC services, pharmacy history, the early intervention program, pharmacy utilization we currently have a project called Emed New York, which is with health information exchange, where Medicaid data is being fed to private physicians, and also the CDC Health Information Exchange Project. Next slide.

Some of the data systems that currently reside within the Division of Family Health that are pretty much all siloed are we have a statewide perinatal data system, which is the electronic birth certificate with QI variables. We have a neonatal intensive care unit module, the lead registry. We have family planning information, early intervention, newborn bloodspot screening we work with our labs on that newborn hearing screening we’re working to make that individual; currently, unfortunately, it’s aggregate data and the congenital malformation registry. Next slide.

The foundation that we have for integrated child health information is we have a statewide secured network, and currently, we have a number of different information systems in the planning phase. The lead registry is doing a lot of case management updates. The early intervention system just is going through an overhaul, and this is a system that also interacts with the provider at the point of care. We’re as I said, we’re talking with newborn screening and the immunization registry.

We have the benefit of having a prototype Integrated Child Health Information System, which was called ICHIS. And this was developed in the late 1990s. And I’m going to tell you a little bit about that in a minute. And we’re also looking to the future to link with expanding electronic health records systems and standards. So next slide.

The child health information system that was developed in the late 1990s was a grant-funded project that developed a data warehouse of children’s health care information. This was linked anonymously and longitudinally across multiple data sources. You know, the vision, if you look at the slide, was that it came into sort of a matching engine environment, and then all of the programs would be able to feed into that, but then you could get different information from that. The project was able to integrate hospital discharge records, birth certificates, death certificates, the congenital malformation registry, and vaccine-preventable communicable diseases. And it was for children born in the years 1995 through 1998.

Unfortunately, after this initial investment, the project slowed because of the lack of sustainability. But the other caveat to this was, the information had to remain anonymous. So there was really no way to identify a child or to share this information outside of the health department. But a lot of very technical work was done on the matching process. The next slide.

You know, the overall goal for that system was to serve as a single primary source of child health data and information. And we had questions, you know, that next slide that we thought that we could answer from this system. Next slide.

You know, we wanted to know, could we link health outcomes and potential risk factors? Could we improve the health outcomes of children? Are they improving, or are they declining, and what could we do about it? Can we assess the quality and access to care? And would we be able to create a community-level child health report card? Next slide.

So with that history, you know, what we see as barriers to child health information system development is are a lot of the things that have been mentioned so far you know, the separate legal authorization and confidentiality rules that sort of govern each of our different programs that collect certain information. These laws surrounding the data collection prohibit the sharing of this information. So that has to be addressed almost on a program-by-program basis. And each program is interested in what they need to collect, so often it’s very insular. We everyone when they developed their system, they have their own data definitions and vocabularies. And through this child integ health integration system effort that we are now beginning, we hope to address these different problems to make it a more standardized approach, so that when a new application is being developed, these methods are already there as a basis, and we can just then bring people in, and we’ll have a standard way of doing it. Next slide.

We also know that the barriers to integrating data is communication. Everybody is very busy. There are a lot of things going on, so we’re trying to address this. I spoke about the lack of standardization for data elements. You know, finding sustained resources, including personnel, is always an issue. We have to make sure that the data collection for, you know, programs is adequate, but we also, I think, in the long run, want this to be very patient centric and bidirectional. We want to make sure that, you know, we have the access rules for different data in place. You have to address, you know, the varying consent and confidentiality provisions. And then the statutory and regulatory restrictions that we face in state government. Next slide.

So the scope for the implications for our planning is, we want to make an integrated environment that fosters the creation of application and infrastructure standards following federal and state guidelines. We’re going to use a formalized approach, and we want to make sure that we really have good communications, since there are so many varied projects going on within the state. Next slide.

We realize that we want to make sure it’s a bidirectional informational flow. We want to use existing infrastructure, and we want to make sure we utilize existing national standards and provide for privacy and data security of the participants as required. We want to make sure that we’re not developing something that can’t communicate with another state in the future if that’s necessary, you know, as we’ve seen, like with immunization in recent disasters. Our design is going to start small and grow, and we’re going to have sort of a phased-in approach of integrating all these different systems.

And then I’ll talk a little bit now about the other projects of interest that are going on, as far as the regional health information exchange and the electronic health record. Next slide.

Our Office of Health Information Technology Transformation is taking on the statewide approach to standardization and collecting of health data. And if you look on the left side of the slide, you can see that current landscape it’s all point-to-point, and there’s not a whole lot of communication. And the vision for our health IT is that the Statewide Health Information Network, New York, which is the circle in the middle, coordinates electronic health records throughout the different entities that need information. And there are many, as you can see you know, labs, pharmacies, hospitals, clinics, consumers, payers, government, and physicians.

So if you look at the next slide, the way that we can show it in a picture form is that it’s very patient-centric, and that the flow of information will flow through the state health information network to all of the parties that need to get it. And as you can see also, it’s bidirectional. And you know, this is the type of thing that, I think, in previous presentations, was very much emphasized. And we want to make sure that there’s cross-sectional interoperability here and that the our partners benefit from it, but that also that public health is at the table, so that we can also benefit from it also.

So the next slide if you if anyone has any additional questions about that piece, you know, certainly contact us. I put our contact information here.

And the next part of the presentation will be by Mike Flynn, who will show you how our immunization registry’s very functional with our providers and is going to be very much bidirectional.

>> Michael Flynn:

Next slide, please. So first, I’d like to thank you for the opportunity for us to talk about what we’re doing in New York and for me to be able to talk about what we’re doing with the immunization registry. Next slide, please.

First, we’ll start with just a little bit of background, you know, for some of you that don’t know the 101 of registries, what it is. It is a confidential, Web-based data system, and it’s designed to collect and consolidate vaccination information from health care providers, particularly, in this case, New York State and outside of the ci outside of New York City. I think you’ve heard of the value of registries that was mentioned earlier by Marilyn in the situation of Hurricane Katrina, where the dislocation of so many children. Louisiana had a nice operating system that was available to states nationwide, and people were able to find immunization information for those children, which relieved them of needless vaccinations. So we’ve really proven the value of having the ability to share information broadly, and that’s what we’re trying to do even more so in New York State with what we’re doing.

Historically, we did start back in ‘94, around the same time New York City did, and they’ll be on a little later to discuss (inaudible). In ‘94, we are actually a voluntary system, and it’s important to note that we were in an informed consent situation, where providers chose to participate, and then they had to ask for consent. Recently, we had that changed, for reasons we won’t get into due to time. We’re finding less and less participation by providers, and they actually found that the burden of getting consent from parents was prohibiting them from really wide-scale participation from the parents. It wasn’t so much parents were reluctant to give consent. It was more a business model didn’t lend itself to capture more paper, with already the tons of forms that are needed when a child goes into a system.

So we did have a legislative change that mandated provider participation, and it started as recently as this past January. And for children for individuals under 19 years of age, providers in New York State that administer immunizations must report it to the registry. There is no opt-out provision. And that’s specifically to make sure that this is not associated with HIPAA. This is a public health legislation, and it precludes us from following any of the HIPAA legislation or rules. (Ahem) Forgive me. Next slide, please.

So what we’ve done is, originally, in ‘94, because we’re a voluntary system, our original approach was to develop applications that we gave to providers to install on their local systems. That was to allow them to capture both the consented and nonconsented so they could benefit from the value of the registry, which is more than just having the histories: It provides a lot of functionality in terms of being able to schedule shots, knowing when kids are due for shots, seeing which shots are missing, being able to do aggregate reports. It really had a lot of functionality. But due to the consent/nonconsented situation, we had that problem.

And recently, what we’ve done is moved to a Web-based application. We awarded the contract to EDS in 2006, and what they are doing is modifying an application that was started in Wisconsin, the Wisconsin Immunization Registry. This is an application that they developed with EDS, with CDC funding public funding, which makes their application actually available free to anyone that requests it. Our contract with EDS is just to make the modification specific to New York State requirements. But this is an application that’s available free to any state. And in fact, 12 other states are using this application. And we’re in the process of trying to form a consortium of users that would maybe put us in a position to work with EDS to a more economical model, that we could all benefit from more modular changes as we go forward as to the growth and changes that we need in our registries.

Marilyn talked about access of our system through our health commerce, I think, in terms of where we connect with the provider community. We do have a secure connection through the health commerce system. We’re leveraging that to use our registry, so providers that are already online and have to use it for other public health use we’re using that connection already for them to connect with the registry. Obviously, there was no fee for participation in the registry. It’s a free application that is available for them to use. Next slide, please.

And the key features there you are the key features. As I said before, the value of the registry is not in just having the information. It goes to the functionality that probably isn’t available in existing medical records software already. So not only do they have the read-write access for the immunizations. They can have access to the other information from other providers. We do have a de-duplication algorithm for the immunization shots so that you minimize the number of repeated records. There is a scheduler. We look to the ACIP-recommended schedule, and based on the schedule they provide, we make the recommendations as to when shots are due, when shots are overdue. You can generate immunization patient-level immunization history reports.

You can’t discount, come school time, the amount of children that need their histories to get into school. Provider offices are inundated with numbers of parents asking for them to go pull the medical record and record that information on a sheet of paper so their kids can get into school. We can automate that process right at the desktop for that office and really streamline their business process, and actually save them a lot of money by eliminating that needless pulling of records. And that goes even further for when they have to do quality assessments or HEDIS or [indecipherable] reporting. And there’s a reminder recall and VFC. So really, we’re pushing the value of the functionality to the provider, along with just having access to the information. Next slide, please.

But as we all know, we have to be able to be versatile in how this information comes in to us. And although we do have a Web-based application that allows a provider to enter the information directly and edit it it has all the functionality we know they do have medical record systems that already have this information. There’s no need for a redundancy of data entry, so what we’ve done is, using an HL7 messaging standard and flat-file specifications, we do allow the export of information from those systems into ours. That relieves them the burden of entering twice. They are then able to log onto the system and then benefit from all the other functionality that I already talked about.

We also do have a link with vital records. This is to be a population-based system. The expectation by CDC and the 2010 goal is for us to have 95 percent of the children under 6 in our system with two or more shots. Our legislation allows us to have all the birth records going back to 2004, so we will be in a position to reach that 2010 goal. That allows the provider also to be relieved of the initial data entry of the child’s name and address, just by looking up a child the first time they come into the office. It also guarantees us, in terms of public health, as identifying pockets of needs. Where are children that are not getting services? We can look at it from our end and make sure that we can target those people that we seem to see not getting shots.

We do plan to, on a weekly basis, be exchanging with New York City. You’ll hear from them later on. They do have a separate system that’s been in operation also for over 10 years. We recognize that people are not only crossing the border between the city and New York State, where residents of downstate New York go into New York City for care and vice versa. But in fact, our border states, with Vermont, Connecticut, Massachusetts, Pennsylvania, and New Jersey the same type of exchange will go on with them. We’ll be working on the same sort of standard of exchange using the electronic format, possibly the HL7 or the flat file. And we will link with other health systems. Next slide, please.

And Marilyn has gone through this. We see that the providers are interested in seeing lead, newborn hearing, blood spot, and a host of others. And that only goes to bringing more value to the provider by having access to more information, and we believe that this is an upward spiral. As you provide more services, more functionality, more information, we believe the inclination is for them to use the system more often, provide better information as they get better results out of it. We think it’s a very positive relationship. As we bring value, the value gets increased to us by better information. Next slide, please.

Nationally, this isn’t just going on in New York. It is a national picture. CDC is funding 46 states along with individual projects, as in New York City, Philadelphia, some of the larger cities. As I already mentioned, there’s a 2010 goal of 95 percent of the children through the age of 5 with two or more shots. It’s something we’re hoping to attain. I believe the legislation will really help us attain that goal. Next slide, please.

I won’t spend a lot of time on this next slide. It’s just a map nationwide of what’s going on. What I do want to point out is how dismal New York State is and how well New York City was doing. This is back in 2006. And I don’t mind saying that, because this is reflective of the voluntary participation and the consent-based informed consent that we had in place. Next slide, please.

So where are we now? In terms of the implementation status of what we’re doing, we’re on the first year of our legislation and of the rollout of our new application. We’re in the process of training and accepting data submissions. We estimate that we really have probably around 2,0003,000 practices that we have go out, train, and get on board within the course of the next 12 months. It’s very ambitious, but we have several different approaches that we’re using. We have classroom training. We have Webinars that are going on twice a day. We have online training tools that are available and manuals. And frankly, what we heard the value of this being a mature system in 12 states it is pretty intuitive. We’ve heard from the other states that they’ve been able to train pretty quickly and have favorable results from those providers.

There are some numbers there for you. Total number of patients, up to 66,000 66 hundred thousand, over actually, we’re over 8 million shots right now, and we have roughly almost 800 active organizations. Next slide.

This next slide is showing the graph of increasing number of kids with two or more shots. And although it’s low right now, at 23 percent, you can see that we’re really jumping very quickly at the end of the year. The legislation that went into place January 1 allowed for providers to start sending that nonconsented data to us ahead of time. So what this really is showing that although, in the past, New York State maybe had 700 providers and only showed around 15 percent of the kids in our system, those were 15 percent of the kids that were consented. Just by starting to send the nonconsented, we’ve jumped almost 10 percent without really increasing the number of providers participating.

So I can’t really stress enough the legislative issue that Marilyn mentioned before and further talk about, as we talk about linkages, exploring the fact that we need to more broadly look at the rules and legislation of our mean data. I really think of the fact that if you take the time the legislation was probably written back when a sheet of paper was sent to a bureau of the Department of Health and kept in a file cabinet, so it went to the communicable disease program or the lead program, and the thought wasn’t there that they would ever need to share it. I think a review of considering the new exchange of information from a very high view of the Department of Health, and what it can do for public health, needs to be addressed. Otherwise, we will, program by program, have to resubmit statutes and changes of legislation to allow for the exchange of information. Next slide.

So wrapping this up, and talking very fastly I felt like I was that old FedEx express talker going through, trying to do the whole thing opportunities. We have to clarify perceived level of effort to comply with reporting requirements and added value. What we’re really saying here is, we really need to explain to the provider the value in using our system. We still think there’s this perceived notion that providers send things to the state and it never comes back. It’s another tower that it goes to that they never get benefit from. And that is a very important mindset we have to change. And that’s where we really argue that in the registry, we’re really giving empowering them to do the public health for us by having the correct information to ensure children are immunized correctly and properly. So we need really to educate them that this is a change in public health by really giving them the information tools that they need to make their own practice and to ensure that the public is safe.

As I already mentioned, the legal authority we really need to rethink, at a very high level, how we can exchange this without having to go through step by step. Right now, just specifically, as lead thinks about partnering with the immunization program, statutes have to be changed in both the lead and both the immunization. As we go to the next level, newborn screening or hearing, that legislative change will have to, and that will really slow down the process.

We need to not only uptake in adopting national standards. I think we have to be very active in developing them. I know I have been part of a group called the American Immunization Registry Association, AIRA. We’re very active in trying to participate in what these standards should be. In fact, I know early on, the immunization program developed an HL7 implementation guide that was used and adopted by a lot of states. But even that and I think New York City will talk about that has its own problems in terms of adoptions. But my point is, we need to not only be passive, but active. Be part of that change, and be prepared for that change.

And finally, developing universal parameters de-duplication, for one. I think we already heard Connections is on that road with unique records. Portfolio: If we can be on the same page and have the same level of understanding of quality of data as we start to exchange it, I think that’s very important. Beyond just information, there’s a level of quality that needs to be expected when you do exchange of information, having these standards in place.

And also, within the immunization community, there is a group called the Modeling of Immunization Registries Occupational Workgroup, MIRO. They come up with some great white papers that say “standards for data quality,” “standards for” move their goal and elsewhere status, knowing where people are, so that when we do exchange with states information that we understand what we’re really sending, not that it’s the same code table, not that we understand the actual value, but what does that value mean, in what context? Next slide.

So I leave you with another bit of contact information there. There’s our Web site for more information. Obviously, if you want more information in general about CDC, you’re available to contact the CDC Web site. I leave you with myself and Project Manager Loretta Santilli, who couldn’t be here today, if you have questions for us. Thank you.

>> John Lumpkin:

Thank you. We’re going to move on to Chris Wells.

>> Chris Wells:

Good afternoon, everyone. Thank you very much for having me today. My brief talk for you is on Colorado’s Maternal and Child Health Information System. Next slide, please.

Okay, what we’ve done here over the past 8 years in Colorado is to create something that we’ve coined the CSHCN Data Integration System. The CSHCN or Children with Special Health Care Needs Data Integration System integrates two different applications. These applications are set with codes designed to perform specific functions, and the two applications are CHIRP and NEST. And yes, I can tell some of you are thinking my predecessor did have a strong liking for birds. But anyway, the acronyms have stuck. And CHIRP stands for the Clinical Health Information Records of Patients, and this is the program or agency database. And NEST, which stands for the Needs, Evaluation, Screening and Tracking System and this is the centralized database, and integration application. Next slide, please.

This system evolved from the original EHDI NEST project funded by CDC back in 2000. The original EHDI grant was a 5-year cooperative agreement with CDC. And since then, Colorado has received three additional EHDI RFPs, and these occurred between 2006 and 2008. And the CHIRP stand-alone applications were completed in 2005, and I’ll show you in a moment that we have numerous different CHIRP applications. The NEST architecture was completed in July of ‘06, which is, again, our centralized database and integration application. Finally, Colorado’s CHIRP and NEST applications became fully integrated in November of 2006 to create this new CSHCN data integration system.

The new system tracks and identifies children with special health care needs through universal screening programs and Colorado’s birth defects registry, and the system then links those children with appropriate follow-up services at Denver’s The Children’s Hospital or HCP local offices. In addition, the system facilitates care coordination for children identified through their own communities. Next slide, please.

The CHIRP application’s a tool that we give to a program or agency to use to track its caseloads. CHIRP is program or agency specific. It can be customized to track either the program’s or agency’s caseload. We have a number of canned or standard reports, or we can customize reports for that program or agency. And we’ve created a standard user’s manual to aid program staff in using their specific CHIRP. Next slide, please.

We have several different CHIRP applications that are currently being used. The first one I’m going to go over is our newborn hearing screening CHIRP, which is used by the newborn hearing follow-up coordinator and our state audiologist. We have a health care program for children with special needs, or HCP CHIRP, that is used by state HCP staff, 14 HCP regional offices throughout the state, and county nursing offices throughout Colorado. Next slide, please.

We have a traumatic brain injury CHIRP that is used by state HCP staff for traumatic brain injury administration and Denver Options staff for TBI administration. Denver Options is just a statewide program that provides care coordination to children and adults with traumatic brain injury. We also have a newborn metabolic screening CHIRP that is used by our newborn metabolic follow-up coordinator, and we have a hemoglobinopathy CHIRP that is used by the hemoglobinopathy follow-up coordinator at The Children’s Hospital. Next slide, please.

We have a sickle cell screening CHIRP that is used by the hemoglobinopathy follow-up coordinator and sickle cell staff at The Children’s Hospital here in Denver. And finally, we have an inherited metabolic disease screening CHIRP that is used by IMD staff at The Children’s Hospital. Next slide, please.

So the NEST is our centralized database and integration application that allows the CHIRP applications to communicate and, when appropriate, share data between different agencies. Some of the functions in NEST include assigning a unique identifier to each individual that is processed through. Again, it allows CHIRP applications to communicate between one another. NEST shares data based on business rules that is agreed upon by the participating programs or agencies.

And this application was built using Microsoft’s BizTalk server. Even though Microsoft BizTalk is a pretty new type of application, we chose it because it allows for the integration of applications through five key processes that include document transport and routing, data transformation, application integration, process automation, and scalability and manageability services. Because we knew that we would be interacting with all sorts of different programs or agencies out there, we like BizTalk, because it would allow us to easily take whatever kind of data that the program or agency would provide us, such as flat files or Excel documents, XML, whatever, and drop it into the NEST for processing. Next slide, please.

So currently, NEST incorporates data from a number of sources, the first being the first data source that I’ll go over is our own state vital records’ electronic birth certificate. And what happens is that we receive a daily flat file extract from vital records, and we import those records directly into the NEST. The NEST then automatically transfers hearing loss cases, identified through newborn screening at the birthing hospitals, as well as those newborns missing the screening, and these are funneled through to our newborn hearing screening CHIRP. The newborn hearing screening follow-up coordinator then receives alerts showing that the new data has arrived and can subsequently begin to contact families and connect them with appropriate follow-up care.

In addition, our daily process of the EBC includes updates to records updates to known records, such as changes in paternity or adoption. So as a result of a change to a record, NEST will notify agencies of new information on known individuals to the system. Next slide, please.

We also incorporate data from our state lab and research department, their newborn metabolic screening results. This is also given to us on a daily basis and is used by our newborn metabolic screening follow-up coordinator to follow up those children with positive screens or missing screens. In addition, this information is routed to our hemoglobinopathy, sickle cell, and IMD specialty clinics to provide confirmatory diagnostic tests and early intervention efforts. So when a positive screen shows up, all known information on that individual and this actually includes all matched demographic information from the birth certificate is transferred to and populates that respective CHIRP. Next slide, please.

Our final data source at this time comes to us from the Colorado Response to Children with Special Health Care Needs, or CRCSN. And this is Colorado’s birth defects registry. Once a month, CRCSN gives us an electronic XML file to import into the NEST. And then the NEST then processes each record and sends a notification to the appropriate HCP local offices for possible contact and intervention. The HCP regional offices or the public health nurses then use that information for care coordination purposes. As a result of any contact with a family, information is then automatically funneled back through the NEST to CRCSN here at the state health department for tracking purposes.

Anecdotally, one HCP local office reported that prior to linking the NEST and CRCSN data, it took their office technician about 2 full days to enter all the paper CRCSN referrals into their computer. And prior to this, all CRCSN would mail their paper notifications to each of the HCP local sites. So now the referral data is electronically transferred to every HCP local office. And this is, I guess, obviously a good example of how our new IT system has reduced paper usage and the cost of mailing all that information out to the offices. Next slide.

This slide displays kind of the big picture of what’s happening. I actually don’t like this slide too much, because it’s entirely way too busy. The reason I included it is that, if you look down in the lower right-hand side of it, you’ll see that the vision was originally created in February of ‘03. So it’s taken us the better part of 5 years to put all the pieces in place and come up with this operational integrated system. And we do have most of the pieces in place. The only piece that is kind of showing here that we’re still working on is our integration with the immunization registry here in Colorado. Next slide, please.

So to wrap up, some of the advantages to integrating data is that it eliminates illegibility and reduces error, it facilitates data collection and analysis for quality improvement, it reduces redundancy by eliminating double entry, and it automates and improves communications. And another specific example I have of this automation is that the system can automatically generate letters to staff that staff can print out and send out. Next slide, please.

Some of the barriers to integration, again, include a lack of standardization. A big one is sustaining resources that include personal and hardware costs. Many times people believe that once the system is built that there’s no ongoing maintenance cost, and all of us that are in the business know this is far from true. There are different access rules for different data, varying consent and confidentiality provisions. Other statutory and regulatory restrictions resistance to change is a big one here. The process in going from paper to electronic can be hard for some people that are a little bit IT-phobic, and we’ve come we’ve had some specific examples of that. And the last one I have is communication barriers between interested parties. And once you get different personalities involved, occasionally turf wars can ensue. So anyways, that’s all I have now. And I guess I can take questions or we can I can wait until the end of the session.

>> John Lumpkin:

We’re going to move on to Amy’s presentation and then take questions and then

>> Chris Wells

Okay. Thank you.

>> John Lumpkin:

go to Marcus Cheatham. So Amy Metroka?

>> Amy Metroka:

Good afternoon. Can everyone hear me? (Pause) Can’t hear me.

>> John Lumpkin:

Yes, we can.

>> Amy Metroka:

You can (laugh), okay.

>> John Lumpkin:

Yes.

>> Amy Metroka:

Hi, everyone. We’re going to swing back around to immunization systems. May I have the first slide, or second slide, please?

This is a brief overview of what I’m going to talk about today, which is immunization information systems, or IISs, and their relationships to health information exchange networks. We’ll focus a little on the New York City IIS, which is called the Citywide Immunization Registry, or CIR. We’ll talk about our integration of CIR with our lead registry in New York City through our master child index. We’ll talk about the data reported to our systems in 2007 and shared with health care providers, health plans, schools, WIC, and other users. And then we’ll briefly describe where we’re heading in 2008, which is to build a real-time HL7 Web service for data exchange with electronic health records systems and other systems. And let me mention that we’re doing this in collaboration with our colleagues here in New York City from the Primary Care Information Project. Next slide, please.

This is CDC’s definition of an IIS, which is a confidential computerized immunization system that records, stores and provides access to children’s immunization records. Some of the benefits of IISs are that they consolidate immunization records across providers. And in places like New York City, children do see multiple providers in their first few years of life for health care. IISs provide access to immunization histories and recommendations of immunizations due decision support, which helps to reduce missed opportunities by providers when they have a child in front of them for whom they have no immunization history. IISs are used to identify children in need of immunizations and facilitate reminder recall to parents. Immunization programs use IISs to monitor vaccine uptake and immunization coverage and then target resources to areas of greatest need. Immunization programs and other parts of the health department also use our IIS to control outbreaks by identifying people at risk and targeting interventions. IISs increase staff productivity, which translates into saving money. And IISs help ensure compliance with school entrance requirements. So what can IISs contribute to health information exchange networks?

So we would put forth that IISs can provide a quick start by leveraging existing data-sharing activities. IISs have existing integrated data and population-based data to share. In the 10-plus years we’ve been working on IISs, there is a fair amount of expertise that has been developed in de-duplication; database management; Web applications; and data exchange, including HL7. We have many existing relationships with relevant stakeholders, health care providers, hospitals, health plans, medical professional associations. And in government, we have a great deal of experience in negotiating and implementing data-sharing agreements.

Just to come to now a quick summary of the CIR, which is the New York City’s IIS: We’ve been operational citywide since 1997, accessible via the Internet through our Web application called the Online Registry in 2002. In New York City, there is mandatory reporting of all immunizations administered to individuals under the age of 19. We do load a file from our vital records every week, which includes birth, corrections, and infant deaths. Our CIR currently includes about 3.3 million patients with over 33 million immunizations.

In 1999, the leadership of our health department made the decision to integrate our CIR with LeadQuest, which is the health department’s blood lead test registry. To achieve this integration, we built a master child index, which was completed in 2004, and the MCI contains all patients in both CIR and LeadQuest. It enables the display of immunizations and lead test results in the online registry for providers, health plans, schools, WIC, and others in the community. And the NCI is able to display other child health information, such as newborn screening results, should that decision be made, which is under consideration at the New York City and New York State levels.

Brief overview of the data reported in 2007: From vital records, we received about 128,000 births; from immunizing providers, 3.1 million immunizations through electronic batch file transfer. These would be from provider EHRs, EMRs, or billing systems. From immunizing providers going to the online registry and adding immunizations patient by patient, we received 1.5 million immunizations reported in 2007, and 1.4 million immunizations were reported on paper. We completed a pilot data exchange last fall with the New Jersey IIS, and that resulted in 4,000 immunizations being added to the CIR. And about 500 lead tests were added to LeadQuest that were reported by laboratories to New York State, and New York State sent those tests for the city kids down to LeadQuest.

Next slide is data having a little trouble here is data shared. About 420,000 immunization records were sent out via electronic batch file transfer in this case, mostly to health plans, managed care organizations, and some large provider systems. About 375,000 lead records were sent out in this same manner again, mostly to health plans. Twenty-seven thousand immunization and lead records were made available via phone, fax, or mail to providers, health plans, parents, and other people. And 840,000 immunization and lead records were viewed through the online registry, which is about half of all data shared in 2007.

I want to describe now our online registry. It went live on the Internet in June 2002. It’s designed for external use, primarily health care providers, health plans, schools, and WIC. Providers report immunizations in real time currently. And enhancements are under development now which will allow lead results to be reported through the online registry. We expect that those enhancements to be done by this June. Providers, health plans, schools, WIC access immunization and lead screening histories through the online registry. The online registry offers providers clinical decision support, which is immunizations do now. There are some other features. One that I’ll mention is that the medical forms for schools, camp, daycare are available on the online registry, and providers can generate them, print them out with immunizations already filled in and patient and provider demographics filled in.

We have seen a dramatic use increase in use, in the last 2 years, and we’re coming to a graph which illustrates this. Let’s see. The view it’s kind of hard for people I think to see much of this, but what I’ll say is that it’s obviously showing a dramatic increase in the number of facilities using the online registry, which are the bars the light blue bars. The red line is showing the increase in reporting of immunizations through the online registry. There is some fluctuation month to month, but overall, a much larger percentage of immunizations reported are being reported online, which is somewhat remarkable, given that it involves looking up a patient and adding immunizations patient by patient, immunization by immunization.

The other thing I’ll say about this graph is that, if you can see the dark blue and purple lines that they have converged recently. And this is very good news to us, because it means that our enhancements to the online registry to help users have more successful patient searches are paying off, where this is showing that the number of searches are finding more records. And in fact, “patients viewed” has actually exceeded the searches, because we now have a feature where once a provider does a successful search of a patient, that patient’s name sits on a list for that provider, and then just the name needs to be clicked, and the provider can see the record right away. And so that’s counted as a patient viewed, but not as a patient searched.

So the next slide is oh, please go to the next slide. And the next slide is the online registry, sort of just a visual representation of the systems and how they interact. Let me just walk you through it. The laptop picture at the top represents the user, which, in most cases, is a health care provider. And the provider does a search for a patient, and that comes to our online registry Web server in the health department as a record request. And once that happens, a call is made to the CIR database on the left, asking for the immunization history. A call is also made to the MCI services, which sends which asks for the ID of the patient in LeadQuest, and then a call is made to LeadQuest for the lead history for that patient. And both the lead history and the immunization history come back and are displayed as an integrated record for the health care provider to view. And if additional child health information systems come on board, they will function very much like LeadQuest is currently functions in this diagram.

Some impact we’re seeing of data sharing: First, there has been an improvement in lead screening coverage. The percentage of children with more with one or more blood-level lead tests before the third birthday increased from 84 percent in 2003 to 89 percent in 2006. Immunization coverage improvement: A percentage of children 1935 months of age completing the 4:3:1:3:3:1 vaccine series increased from 72 percent in 2006 to 80 percent in 2007, according to the national immunization survey. Figures just came out. The percentage of children 1012 months of age completing a slightly different series, because they’re younger, 3:2:2:2:3, increased from 33 percent in 2006 to 53 percent in 2007, as measured in our CIR. And for the group of children that we exchanged data with New Jersey on, the percentage of kids with the New Jersey address for whom we got these additional shots the series completion increased from 25 percent to 32 percent. Next slide, please.

Okay, so in 2008, we are looking to move toward bidirectional data exchange and data exchange in real time. We’re engaged right now in building an HL7 Web services to exchange data between the CIR and provider electronic health records systems. This would enable real-time reporting and eliminate duplicate data entry for those providers who are currently going to the Web app and reporting their shots or reporting on paper. We’ll be providing CIR’s consolidated immunization history back to the EHRs, with our decision support for immunization recommendations. We will be using this service to exchange data with other IISs, including our colleagues in New York State that presented earlier, as well as New Jersey and hopefully other states nearby. And we hope to use it to participate in regional health information organizations exchanges. Next slide, please.

So our HL7 Web services: Here’s sort of where we are and what our next steps are. We’re engaged in finishing the software development. We hope to be finished by May 2008. And we in CIR are doing this in collaboration with our software partner, HLN Consulting. We will be testing our software Web services with EHR vendors, very much in collaboration with PCIP between May and June 2008. Our HR EHR partners are working on changing their EHR products to use our Web services and display the integrated immunization history and decision support in a user-friendly manner for their clinicians in deployed integrated EHR. And once we’ve done all this, we’re going to be enhancing the interaction in an effort to try to replicate the online registry experience in the EHRs. Next slide, please.

Some of the challenges: In terms of partners, it’s been difficult until recently to identify partners ready to use HL7. Partners are accustomed to batch file data exchange up until now, and we need real time to give up-to-the-minute decision support based on age and immunization history and any immunization that was administered that day. Our EHR partners need to integrate, store, and display their information and CIRs integrated in their own application in a user-friendly way. Next slide, please.

There are design challenges which we found are that the HL7 standard is complex, difficult to learn, to read and write messages. Testing requires use of the new tools. The technical design is very time consuming. Requirements gathering and technical design is complicated. We found that there are many ways to solve some problems. IIS functions are not 100 percent covered by HL7 messages. And I think I neglected to say earlier that Angel Aponte, who’s our computer specialist here in the CIR, is with me on the call and available to take questions on these technical issues, should anyone like to ask them. Next slide, please.

We’ve found that there are HL7 variations, and that’s a challenge. There are different versions, even between the version we’re using in New York City and our colleagues in our own state, as well as different versions than some EHRs are using. We are using a commercial parser, which is helping. There are variations from some standard HL7 messages: VFC, vaccine for children program, eligibility by shot; use of custom HL7 message components called Z segments; and there are different vaccine code sets being used, most commonly CVX and CPT. Next slide, please.

Our lessons learned are, “Budget a lot of time, but it’s worth the investment. It’s a complex process, and the logistics of getting two or more parties to agree on design is not easy. It’s helpful to have a standard for everyone to code to HL7.” We found that development of a thorough HL7 Web services integration guide, which we have available and are willing to share, if folks want it, has been very useful to our EHR partners. Next slide, please.

And I’ll proceed here quickly to conclusions. And we conclude that based on our experience in New York City that IIS infrastructure can be successfully leveraged as a platform for integration of child health information systems within public health, which we think has been demonstrated by our workwith our MCI; as a portal to child health records for health care providers, health plans, schools, WIC, and other users, which we have some experience doing with our online registry; as well for real-time bidirectional sharing of child health information with provider EHRs and health information networks, which is what we are building now are Web services. Next slide, please.

I’d like to just acknowledge my colleagues in the bureau: Jane Zucker, my boss, who’s Assistant Commissioner of the Bureau of Immunization; Angel, Vikki Papadouka, Paula Schaeffer, Shirley Huie, Fritzner Paul in CIR; Andrew Faciano in LeadQuest; and from HLN Consulting, who is our partner in software development and support, Noam Arzt, Michael Suralik, David Lyons, Peter Sfiridis, and Regina Hyder.

And my last slide, please, which is just contact information. We’re more than happy to answer questions. I can answer program questions, and Angel can answer your technical questions. So thank you very much.

>> John Lumpkin:

Right. Thank you. I think what we’ll do is move on to Marcus Cheatham from NACCHO and then take questions of all of you from the Workgroup.

>> Marcus Cheatham:

Thank you very much. One of the things that you received in your packet was a paper from the Public Health Informatics Institute. And I’d just like to say, when I read that, I thought that really told the Michigan story very, very well. PHII actually came out here at one point. So much of what I would have said if I hadn’t read it would have just recapitulated what was in that paper. So I started thinking, you know, “What can I add that it hasn’t been said by some of the other speakers?” And I thought I would really try to talk about local public health, the way we see things here next slide you know, what we’re thinking about when we get up in the morning.

The Ingham County Health Department is a member of NACCHO. We belong to the an umbrella organization of human service providers in our community called the Power of We, and we report to the county board. At all three of those levels, we’ve been given marching orders to work to reduce health disparities. And so that’s what we’re thinking about when we come to work in the morning, not necessarily health information exchange. What you see on the slide there the yellow line at the top is the African-American infant mortality rate in our community. The green line toward the bottom is the White race. There’s a big health disparity there. Next slide, please.

Just to make it a little more clear what’s going on there, we tried to forecast the infant mortality rate in our community going out into the future. We worked with some folks to fit a curve to it, and we were stunned. We thought when we did our forecasting, we would see the gap between Black and White infant mortality in our community closing. And instead, as you can see, infant mortality is drifting down for all groups in the community, but the disparity remains exactly the same. So if we don’t do anything different in our community going forward, we’re not going to reduce health disparities.

Let me show you a different cut of the data. Next slide. What you’re about to see is a map of the greater Lansing area, where we are here. It’s by census tract, and the census tracts are color coded. The red and orange areas are high-infant mortality census tracts. They’re mostly clustered in the city of Lansing. Blue and green are suburban and rural.

The red areas have infant mortality rates over 17 per thousand, which is very, very high. It’s even higher than the average African-American infant mortality rate. Interestingly, a lot of the red census tracts actually are racially mixed. They’re not predominantly African-Americans. So high infant mortality affects low-income groups in our community across the board. But the blue areas are areas which have infant mortality rates under 4.5 per thousand. In other words, these areas have attained the Healthy People 2010 standard for infant mortality.

So if we want to tackle health disparities in our community, we’ve got to shrink those red areas. We can’t do it by broadcast interventions. We have to really target populations. Next slide, please.

And so this thinking led us to develop three core principles, which we bring to bear when we work on health information integration health information exchange. The first principle is that integrated systems should focus on populations most in need. That means in terms of providing services at the point of care or in data analysis. I was really excited to hear Dr.Kus talk about the issues with public health follow-up. You know, we experience that the you know, in health information exchange, there’s a lot of emphasis on exchanging data with the state, exchanging data with the CDC. And we really don’t want people to forget that data needs to be exchanged with local public health.

Second principle is that integrated systems should connect systems of care that serve those most in need. And of course, HRSA is really out in the lead on this, trying to reach out to the Federally Qualified Health Centers and get them connected. But we’re anxious in Michigan that the safety net providers should not be left behind here.

And the third principle is that integrated systems should connect clients with the entire universe of resources available to them in one stop. So it’s not just about exchanging data, but when you’re dealing with people who have problems and need help, that information also needs to be integrated. Next slide, please.

So now I’m going to talk more specifically about what’s really going on here in Michigan. I’ll try to answer some of the questions that you sent to us. We really have a conflicted terrain. We’ve heard from people providing integrated immunizations registries. Well, immunization registries are definitely the immunization registry out here in Michigan’s definitely in the lead. That’s an example of a system that is really integrating. But other systems are they’re continuing to try to integrate really by brute force, just by tunneling into one another, rather than using standards-based systems.

The State is attempting to launch a RHIO-based health information exchange through the Michigan Health Information Network here in Michigan. And that’s you know, really, we think that’s the way to go you know, HL7 standard-based system. But other systems continue to lag behind. Next slide, please.

So our immunization registry the Michigan Care Improvement Registry is in the final throes of becoming HL7 compliant. I think some of you on the call either know or have heard the reputation of Therese Hoyle, who’s leading this project. From the very beginning, her vision was that it would serve as a basis of integration of maternal and child health care systems here in our state. It she expects that this system will interoperate with electronic medical records and clinical messaging systems as regional health information organizations roll out here in the state in the future. And also, there is the beginning of interoperation with lead testing, asthma registry, sickle cell newborn screening my understanding is that the systems really aren’t completely interoperable, but they are exchanging flags, so somebody can find out if there’s an issue in another data system to look into that.

Just a little I’m going to mention MCIR in the future a little bit of local color: We don’t say “M-sir” or “M-ker” in Michigan. We say “Micker.” It sounds like “M-I-C-R,” but it’s written “M-C-I-R.” So if you hear me say “Micker,” that’s the local pronunciation of that acronym. Next slide.

You know, as an illustration of something different, let’s talk about our WIC system. It’s recently been completely overhauled, and the specifications for that project included that it would be an interoperable platform. And my understanding is that the potential is there, but WIC is not really doing much. The driver in the overhaul of WIC was our need to move to electronic benefit cards, which is really, really important. We drastically, at the local level, needed to increase just our efficiency in the office, in terms of getting money to people who needed it. And that was really a business process redesign. That wasn’t so much about interoperation. So there are many other forces here locally that are driving the agenda, when we’re overhauling our data systems. Interoperability is not the only one. Next slide, please.

Our vital records remain the single most important element in our maternal and child health data system. Birth certificates are extremely important. You know, I did ask the question, in preparation for this conversation, whether we have in Michigan a way of identifying a birth, and we do not. Birth certificates are created and exchanged electronically very shortly after birth. The blood test happens very shortly after birth. But none of those really serve as a flag to open a maternal and child health care record that crosses platforms. So we don’t have that in our state.

So birth certificate data are used and changed really by brute force manually. We have data analysts who sit on computers and servers and use keys and manually match data systems and pass them around for analysis purposes. But so data exchange is occurring, but it is not true interoperability at all.

Most disturbing to me was that all of this has had very little impact on public health practice. So I go back to those key principles that I started with. Data have to be available at the point of care with the people who need them. I went over and talked to our maternal and infant health program nurses and asked them, “Is there ever a time when you receive any kind of electronic information when you’re getting referrals or when you’re trying to learn about the families that you’re serving? Is there ever a time that you send electronic information to other people?” They said, “Well, we send email.” But no, they report never using any kind of electronic data.

So information about, you know, their clients are not reaching them at the point of care. There was one exception. We had a nurse who had privileges at a nearby hospital, and she drives across town before she goes to visit a family and uses the electronic medical record system there to get information.

Even if we we are about to roll out EMRs here in our health department. We are a clinical provider in addition to traditional public health functions. But we don’t have a RHIO up and running yet in our community. That might happen in the next year or two.

So even without the RHIO, even if we had an EMR in place here, it would only contain information on our clinical patients. And of course, we see only a fraction of the people in the community. So she’d still be having to drive across town, even if we installed the EMR here.

So next slide, please. So in our community here locally, we really think that maternal and child health integration needs to identify RHIO-based health information exchange as one of the most promising means of obtaining and integrating data. I think you all understand the implications. If you have a network of RHIOs across a state, then all the different systems become nodes on that network; and local public health, state public health, and the different health care providers all would be looking at the same information; and they would have it at the point of care.

I think, you know, going back to the beginning of my talk, looking at the persistent health disparities in our community, looking at those big red blots on our map, we just don’t think that we can start to cause thatslope of the line for African-American infant mortality to go down and close that gap, or we don’t think we can reduce those red zones in our community, unless safety net providers, public health, doctors who see Medicaid patients, the Federally Qualified Health Centers unless they have the information that they need right there at the point of care. That would be the key message that I would leave you with. Thank you very much.

>> John Lumpkin:

Great. Thank you all so much for your presentations. I just have one question, and then we’ll turn it over to the rest of the Workgroup. Given the fact that what we’re charged with doing is making recommendations to AHIC and to the Secretary and ultimately to the various standards development and integration bodies, what would be the one thing that you would like to see us recommend? Marilyn, do you want to start? Or Mike?

>> :

Can you just repeat the question?

>> John Lumpkin:

What is the one thing that you would want to make sure that our recommendations included to the AHIC, regarding the need for standards or in to make your job easier?

>> Marilyn Kacica:

I think you know, as we touched upon a little bit earlier, I think the legal issues surrounding the data need to be looked at, because it is very cumbersome for each program to be looking at specific things. So if there’s some way to address these types of things...

>> John Lumpkin:

Now, when you say legal issues, is that federal law or state law?

>> Marilyn Kacica:

Well

>> Michael Flynn:

That’s true. They end up being state. But even if there was guidelines that we could adhere to, something.

>> John Lumpkin:

Uh-huh.

>> Kelly Cronin:

John, this is Kelly. I was hoping to follow up on that issue, too, since there was such a coupleof good points made around that, around how the different programs have different authorizing statutes and lead, and immunizations don’t work together now. I’m wondering, in terms of specific ideas on how to resolve that problem, would model legislation be a way to try to address that, or is there too much state-specific statute that would have to be addressed through the legislative process to resolve that?

>> Michael Flynn:

That could be a start, if we could see some model legislation between different entities within a state. I know there’s already examples for sharing between states: Wisconsin and Minnesota. They have MOUs for exchange between borders. But within a state, examples of a model and like I would say, I’d like to see an example of a very broad model that would bring legislation to the current age of electronic information and get away from the stovepipes that they were originally written under. That’s the biggest undertaking, I would think. If a workgroup was created to better address it as a whole entity, as opposed to going one at a time, that would be very beneficial.

>> Marcus Cheatham:

This is Marcus Cheatham. Am I on?

>> :

Yes, you are.

>> Marcus Cheatham:

Okay. I think legal issues could also help financial issues. You know, public health participation is problematic because public health is poor. But one of the things we’re struggling with here in Michigan: Our Attorney General and our legal the Legislature has not really helped define the community benefit that health care providers are responsible for providing in a community. And if that could be addressed, at least a portion of the resources that are available to communities in the form of community benefit could be at least directed in some way or permitted to be made available for public health participation and health information exchange.

>> John Lumpkin:

Other questions, comments?

>> Amy Metroka:

Hi, this is Amy Metroka in New York City. I think there’s already an effort under way I think this Group is a part of it to examine the idea of having electronic health records certified or part of the certification criteria to include being able to report to public health, like specifically immunization registries maybe is the first system.

>> Michael Flynn:

Yeah, I think that’s was ONCHIT. And that’s where I think [indecipherable] is part of working with them on trying to that’s where I said, “Be very active in the development of the standards,” and then making sure these standards work toward the otherareas for new you know, the standards used and adopted by the registry communities, adopted by the screening community where appropriate.

>> Amy Metroka:

Yeah, I think it’s important forthe public health entities to be able to get data from, like, the health care providers in a way that’s not burdensome to the health care providers. So if the health care providers are using EHRs, it would be great if it was just very easy for them to be able to report the health information needed by public health through those EHRs that that would not cost them anything extra. It would not require duplicate data entry. So to the extent that this Group is involved with that, I wouldask that you push that forward.

>> Michael Flynn:

Right. I think, as you look at different disciplines, there’s a concern that, you know, where we and we talked about the HL7 in place for the immunization registry community you know, is there any national effort for any of these others, newborn screening or lead, that may somehow adopt a different standard, an XML format? And then all of a sudden, you have a different discipline required by the provider to send different messages. There needs to be some oversight to start standardizing to a certain extent as to what’s expected from their end.

>> :

I think the I mean, I guess that point about emphasizing the connectivity between clinical care and public health care in this development is a real big part to really important part.

>> :

For the health system that was(inaudible) there by Michele.

>> :

Mm-hmm.

>> Amy Metroka:

And I guess I should add this is Amy again from New York City I should add that for those of us in the immunization registry world or in public health in general, I mean, a number of us are moving towards making our systems HL7 compliant so we can receive this data from the EHR systems that are using HL7. But not all of our colleagues have been able to get there. So some kind of effort to help public health comply with those standards would be helpful also, since if we’re going to require the providers’ EHR systems to report to public health, public health needs to be in a position to receive that data and to give data back.

>> :

And I know, Amy, you had mentioned I think it was you who mentioned that the standards were incomplete for immunization information to be transmitted through HL7. Are there certain aspects of are there certain areas that are not covered by the HL7 standard? That may be an Angel question.

>> Angel Aponte:

Yeah, it is. This is Angel Aponte. While we were developing our real-time HL7 interface, we found one or two gaps that in the standard that we effectively had to patch up by doing some nonstandard things. And what happens when you have to do that is that I may do it one way, and then the next party may do it a different way, and then a third party may do it yet another way kind of shoehorning, you know, some need that you hadn’t come up with ahead of time. And then what ends up happening is that when we try to communicate with each other, we’ve found that we’ve done that, you know, one of those one or two or three things that were not covered by the standard in entirely different ways. And we can’t communicate that you know, those particular pieces of information without having to make more modifications to our systems. So, you know, it’sn the HL7 standard isn’t all-encompassing. It does capture the vast majority of the things that we’re trying to communicate, but we did have to shoehorn an item or two or three to based on our needs, into those HL7 messages.

>> Michael Flynn:

Yeah, this is Mike from New York State. I do want to point out that there is a national group of immunization, AIRA, and we’ve been supporting and have an implementation guide that has spelt out a lot of specifications and standardized toeliminate the need for the Z segments and variations. And there is an appropriate workgroup that you can work through to include these variations as they come up, so there is a standard. So I just want to point out and eliminate the misconception there that 90 percent, if not 95, has been addressed with an implementation guide that’s been in place for 5 or so years. It is a group of the states that are working together to keep it updated and current.

It is a big task. I mean, there are variations in the commercial industry that we can’t keep up with. But there is a current forum, and I think we’re pretty well ahead of a lot of other groups in having the appropriate forum for we, as registries, to address these changes and implement them so there are not variations in the messages that go back and forth between these packages.

>> Art Davidson:

This is Art Davidson in Denver. I have a couple of questions to follow up on this last series of comments. So in New York City, as you were trying to develop this HL7 message specification, were you referring to the implementation guide that Mike was just describing?

>> Angel Aponte:

Yes, sir.

>> Art Davidson:

And what might have been reasons for you to have to go away from it? That’s one part of the question. Then the second is, with which EHR vendors are you working, and were they part of the problem about having to move away from that standard?

>> Angel Aponte:

I’ll answer the first the second question first. It wasn’t because of the EHR vendors that we had to move away from the standard. It was because (ahem) excuse me it was because there was a specific feature or two, a piece of information, that we wanted to either receive or give back to the health care provider either receive from or give back to them, and it wasn’t captured in that implementation guide. And, you know, Mike makes a good point that there are that we do have avenues for addressing those kinds of issues. But while I’m in the middle of a development project and a design project, I have to get something implemented. And I can, you know, go back to those, you know, standards bodies that I am a part of and, you know, tell them, “Okay, here’s the issue that I came up with, and here’s how I addressed it.” But while those implementations are rolling, it may be you know, it may be that people are just continuing to implement things in a nonstandard way for those two or three things that weren’t covered at the time by the implementation guide. Yeah, that was the document that we worked off of, absolutely.

>> Art Davidson:

Okay. And then how many different EHR vendors are you working with, and have you come to an agreement about how that standard implementation will work with those various vendors?

>> Angel Aponte:

Right. We’re right now working with a couple, and I can name them. One of them is eClinicalWorks, who is working with the Primary Care Information Project here in New York City. There is another one called Office Practicum that has been shown a lot of interest. The EPICS System has shown a lot of interest as well.

And the way that we are we as Amy mentioned in the presentation, we have an integration guide that effectively spells out every single thing that we’ve done, including those little nonstandard tweaks that we added to it. So that is effectively, you know, our Bible for integrating with us. And we would give them, you know, that document and say, “This is how you can talk to us.” And, you know, we did fit within the HL7 standard, you know, for the 95, 97, 98 percent of, you know, the data coming back. But there are a few pieces of information that we had to kind of shoehorn in there into that guide.

>> Art Davidson:

That’s very helpful. Maybe I just one more question, John, if I might.

>> John Lumpkin:

Please.

>> Art Davidson:

I think it’s intriguing that we have both New York State and New York City on the phone here today and that both of them talk about, you know, sharing data between the two sites. And I think I heard, in the New York City presentation, about development of a Web service that New York State would be using to exchange data from, I guess, New York City to New York State, or maybe vice versa as well. And I heard from Mike as well that there’s there are these efforts or maybe from Marilyn about this bidirectional communication.

So in developing this Web service in New York City, was there an effort to kind of align that with what might be the Web service that New York State is planning on using? And how did you try to work through making the endgame be the easiest outcome for both jurisdictions?

>> Angel Aponte:

That’s an excellent question, actually, because that’s something that we actually had to do. Right as we finished our design phase for the real-time HL7 interface, that Web service that you’re talking about, there was there were some documents and some and there was some funding coming for EHR projects that basically said, “Well, here’s what you have to do to meet the spec for New York City,” and this was a requirement, “and here’s here are some here’s what you do to talk to New York State.”

So what we did at that point was, we looked at the HL7 spec the 2.4 spec that the state is using and the 2.31 spec that the city is using. And we looked at the gaps and the differences, if any, and broke them down, looked at them very closely, and tried to identify the best way to address those, both looking at it, you know, from our perspective as someone who has to implement something, but also, you know, from the per trying to put ourselves in the shoes of someone who would have to talk to both New York City and New York State.

For the most part, I’d say that the differences were minimal. There were a few significant differences. And we’re actually in the process of finishing documenting those differences, and we’re going to have a discussion with New York State sometime soon where we will, you know basically, in the body of the email, will include the big ticket items that absolutely need to be addressed. And then we’ll have a separate document with all the little nickel-and-dime things that are, you know, probably less significant.

>> Art Davidson:

Thank you.

>> Michael Flynn:

This is Mike Flynn. Also, I think it’s worth saying, beyond what the city and what we’re doing, because we already have some HL7 partners also, it’s something to talk about nationally who’s adopted the standards, because there’s vendors out there beyond just who we’re working with that are already using the HL7 standard for exchange of information. I don’t have that information in front of me, but just remember: We represent just a portion of what’s going on nationally in the registry community.

>> Art Davidson:

Thank you, Mike.

>> John Lumpkin:

Great. Any other questions or comments from the Workgroup?

>> Art Davidson:

Maybe I’ll ask one more question, again of New York City. You have a master child index that was described on one of the slides, I think, that I think it was Amy described.

>> Michael Flynn:

Yes.

>> Art Davidson:

And you also talk about the RHIOs that are emerging in New York City. How do you believe that your master child index will relate to the master patient index that will exist across the city?

>> Amy Metroka:

Well, let me say that we’re I guess, at this point, we’re our master child index is for integrating systems within public health. And I don’tknow much about a RHIO effort under way in New York City where a master patient index is being developed. Perhaps there are people working toward that. Right now, what we’re focused on is sharing information with health care providers through this Web service we’re building an integrated data, to the extent possible. And the way we’re integrating it currently within our health department is through this master child index. Does that help?

>> Art Davidson:

Yes, thank you.

>> Angel Aponte:

And I’d like to take a stab at answering the bigger question. And, you know, this and I’m just guessing. I really haven’t, you know, given this a lot of thought. I could envision, you know, a scenario where another index could make a call to this one could make a request for a record, perhaps. Right now, that call that request would effectively be able to give back immunization and lead information that is captured here in the health department. And if we were to add more systems in the health department or more public health systems to that integration, then we would be able to return more information to that RHIO. But that’s what we would be able to contribute to a RHIO like that right now is effectively the immunization and lead history that’s been reported to New York City’s health department.

>> Art Davidson:

So in the state, is the view that the NYSIIS if I got the pronunciation correct, because I don’t know if you use that the larger system it takes city data. Is that correct, in New York State?

>> Michael Flynn:

NYSIIS right now we haven’t started that exchange yet, no. And we, at this point, are just the immunization registry. We haven’t started the integration with other systems yet. So we haven’t adopted whether it’s a master patient index model or some other architecture.

>> Art Davidson:

Okay, that’s that was what I was getting to is, would it be some sort of federated query?

>> Michael Flynn:

That has not been decided yet.

>> Art Davidson:

Okay.

>> Kelly Cronin:

I’m also wondering this is Kelly whether Marcus or others in other states that are thinking about the integration of RHIOs but not are not in an operational phase yet. Are you contemplating how you might handle a master patient index and use that across the public health programs so that you don’tcreate a separate index? (Pause) Is has anyone thought about that? It would be helpful to know, because New York is really advanced in many ways.

>> John Lumpkin:

Well, Kelly, let me perhaps you might know from some of your other interactions. To what extent are you aware of as these networks or these systems are being put together that, you know, individual health plans or whatever that may have a system in place are going to have a master patient index? And it would seem to me that the RHIO one of the jobs of the RHIO is trying to figure out how to integrate that. And perhaps what public health needs to do is to, by being engaged in the RHIO process, make sure that their MPIs is incorporated.

>> Kelly Cronin:

Yeah, I think that’s right, John. I’m just wondering whether or not at a planning stage with a RHIO, whether or not there could be some kind of effort at a state level, if the state programs are not quite far down the path of integration yet, and they are trying to create something like what New York City’s done with the child health index whether they could contemplate just using the same one that’s being created for the purposes of health information exchange more broadly. But I don’t know if, like, for example, Indiana has done that or other states.

>> Marilyn Kacica:

Well, this is Marilyn in New York State. With our SHIN-NY, which is patient centric, we’re involved in their effort. So I think, you know, with our talk about communication, we want to make sure that we’re going along the same type of technology. And if they’re developing it, you know, we’re we want to be able to benefit from it. So we’re in on that process with our child integration also.

So I think, you know, over the next year or so, we’ll be more advanced to be able to maybe tell you more about that.

>> John Lumpkin:

Okay, we’re about out of time. Are there any other questions or comments? (Pause) Well, I would like to thank all the panelists. Your insight has been very helpful. I would urge you not to make this the end of your involvement with the work of our Workgroup, because, as we’ll be discussing, we do have some plans in place to make recommendations to AHIC. And if you could take some time and just spend a few minutes and jot down some ideas of what you would like to see in those recommendations, I think it would help our process significantly. So once again, thank you so much.

>> :

You’re welcome.

>> Amy Metroka:

Thank you for the invitation. We’ll be in touch.

>> Michael Flynn:

Thank you.

>> John Lumpkin:

Great. Under Next Steps, the next meeting of AHIC is April 22, and we’ll be having our next meeting on May 7.

Right now, what I’d like to do is sort of give you my thoughts on how I would see us working over the next few months, with the ultimate goal of delivering a set of recommendations to the AHIC in September, which is, as Kelly talked about, the timeline from the transition from 1.0 to 2.0. And certainly, with Les’s involvement and ultimately a state person’s involvement in AHIC 2.0 development discussions, we can only be optimistic that the issues that the Population Health Workgroup has been struggling with will remain at least something that AHIC 2.0 will be open to discuss.

And so the proposal is that we would finish up our approach to what we’re doing on MCH at our May meeting: that we would review draft outline of MCH recommendations; that we would get the final set of presentations, which would be on school health; and that we would begin to get some presentations on registries, which was the three items. And just to remind you, we had three items that we wanted to sort of have as our summary recommendations: maternal child health; registries, including vital records; and the third being bidirectional communication needs. Also, at the May meeting, we’d want to develop some broad themes for the finalize those broad themes for the MCH recommendation letter.

At our June meeting, we’d like to review the updated draft of the MCH recommendation so we’re working on getting that done complete the presentation of vital records and other registries, and get the letter pretty much ready to go. We’d like to outline our advance to successorsin advice to the successors in the form of a transition plan and then flesh out any recommendations on registries and to speculate, since we won’t have time to have presentations on bidirectional, on what the needs might be for work by AHIC 2.0. We would then review the draft of both the MCH recommendations letter and the transition plans, hopefully be able to finalize those in July or in August meetings, buff them up in August, and then present them at the September AHIC. That will pretty much wrap up our work as this Workgroup, as that will be one of the last meetings. I think AHIC may have one other meeting after that, but I suspect it’ll be summary.

So that’s pretty much our outline for activities. And then just wanted to toss it open to those members on the conference call to see if you had any thoughts or recommendations on that proposed workplan.

>> Art Davidson:

Sounds ambitious.

>> John Lumpkin:

It does, just on the off-chance this is our last best chance to get these issues raised.

>> Art Davidson:

We’re with you, John.

>> John Lumpkin:

(Laugh) Let me make this recommendation. What I think will make this progress process go forward the best is if we can get some volunteers. I think one group of volunteers to work on the MCH recommendations and one group of volunteers to work to spend just a little bit of time in between the meetings to work on our transition recommendations, which would predominantly be related to registries not formal recommendations, as we’re going to try to do with MCH, but, just sort of broad areas that ought to be paid attention to, and the same with bidirectional.

What we’re going to do is, once we complete this call, I’d like to Shu and Laura if we can send that out to all the members, sort of as a request for volunteers and then get that via email rather than trying to twist arms when I can’t see people on the conference call.

So any other questions or comments or items that we ought to address as part of our next steps?

>> Judy Sparrow:

John, this is Judy. Just let me make an announcement about the April 22 AHIC. That’s going to start at 8 a.m. We’ve upped the time a half an hour, so that will go on the Webcast meeting. And then the June AHIC has been rescheduled due to the Secretary’s international travel schedule to June 3. Okay?

>> John Lumpkin:

Great.

>> Kelly Cronin:

Judy, how long is the April 22 AHIC meeting scheduled to last?

>> Judy Sparrow:

I don’t know yet, because I don’t have a completed agenda approved. So I’ll get that out to you as soon as I get it. I suspect it’ll go something from about 8 to maybe 2 o’clock, maybe not that long.

And then finally, I don’t recall that we approved the March 5 meeting notes. Did we?

>> :

We didn’t.

>> John Lumpkin:

We didn’t.

>> Judy Sparrow:

Take it away.

>> John Lumpkin:

Is there a motion to approve?

>> Art Davidson:

I move that we approve the minutes from last month.

>> John Lumpkin:

Okay.

>> Art Davidson:

This is Art Davidson.

>> John Lumpkin:

Thanks, Art. Is there a second? (Pause) Well, I will second it, just to get this going. All those in favor, say, “Aye.”

>> Multiple voices:

Aye.

>> John Lumpkin:

Any opposed? (Pause) Okay we’ve taken care of that.

>> :

(Laugh) Great.

>> John Lumpkin:

We’ll send out the, again, request for volunteers to participate in those two sub-workgroups. And I think we’ve sort of run through our agenda at this point. While we’re we should offer up to see if there are any public comments.

>> Judy Sparrow:

Right. Alison, can you check in with the public, please?

>> Alison Gary:

Sure. Okay, for those online, you’ll see a slide on how to call in to comment or ask a question. If you’re already on the phone, just press star-1 on your phone now to comment. Any wrap-up comments while waiting for the public?

>> John Lumpkin:

Great. No, I just wanted to thank all of you. I think that we’ve heard some very interesting comments in related relationship to maternal and child health, looking at the components of both the immunization registry last month, we talked a little about some of the integration efforts. It’s good to hear from HRSA, and we hope that they will even though they’ve only just presented but will continue to work with us as we try to firm up those issues in the future.

>> Kelly Cronin:

And John, just in case we have any extra time to kill, one question I’d like to throw out there and maybe we’ll just address this offline through our subgroups. But since we didn’t have a Medicaid representative with us, but yet the MMIS system could be helpful to some of the immunization efforts and maybe integration in other ways, does anyone have any thoughts or ideas on what they’d like to see happen through the MMIS program or Medicaid support? (Pause)

>> Art Davidson:

Are you asking for suggested speakers?

>> Kelly Cronin:

No, I’m just asking based on some of the good ideas we’ve heard today, you know, the role of Medicaid to facilitate some of this. And the Medicaid Management Information System and the funding that goes towards that might be one mechanism. But, (pause) anyway, I didn’t want to bring up an issue at the very end of the call. It’s just food for thought, and we can address it offline (laugh).

>> Paula Soper:

Kelly, this is Paula. I just I was off for a class for a little bit, so I’m not sure if this was mentioned, but there was an agreement between the two organizations about a certain level of funding for immunization registries. And to my knowledge, that still stands. (pause) It had to do with a nonfederal match.

>> Kelly Cronin:

Right. Okay, that’s helpful. Thank you.

>> Alison Gary:

We don’t have any comments from the public.

>> John Lumpkin:

Right. Thank you all so much, and we’ll be in touch and talking to you soon.

(General thanks)