Penny Daniels: Molly, thank you so much. These are very important issues and for more on communication and issues involving children, these very critical issues.
I would like to turn next to Dr. Jeralyn Bernier. She is the research director for the Cincinnati Pediatric Research Group within the Cincinnati Children's Hospital Medical Center. She and her group are currently working under AHRQ's support on strategies that allow community-based provider networks to share critically important information with providers to help them better prepare for and respond to bioterrorist events or other public health emergencies. Jeralyn, why don't you start by telling us a little bit about the Cincinnati Pediatric Research Group?
Dr. Jeralyn Bernier: The Cincinnati Pediatric Research Group, or CPRG, is a practice-based research network of 45 doctors and 22 practices in the Cincinnati region. They meet regularly. We in fact meet regularly on a volunteer basis to research questions of clinical importance in primary care.
Penny Daniels: I understand that you were recently looking at some of your systems and you found some weaknesses that you identified in some of your electronic systems, is that right?
Dr. Jeralyn Bernier: We were reviewing our network functioning and in the process of seeking further AHRQ support and we discovered that really only 1/4 to 1/2 of our providers had the electronic communications skills that we had hoped for and wanted to require for our other research endeavors. So we have been in an ongoing effort to upgrade our electronic skills, which included an upgrade to our Web site, CPRG.org, with improved content and access to our research projects.
Penny Daniels: Another thing you did was create what you call the Symptom Surveillance Project. Can you explain what this project is? First of all, what is the purpose of it and what is it?
Dr. Jeralyn Bernier: The symptom surveillance project is meant to involve providers in the detection of outbreaks, both naturally occurring and intentional outbreaks, bioterrorism, and to establish regular two-way communications between providers and the health department, which does seem to be a missing link in most communities. We, in that context, function as sentinels in our communities. Our providers are in full-time practice for the most part and are lookouts in their communities in order to report on symptoms that they are seeing in real time in their offices.
Penny Daniels: So the two ideas here are detection, early detection, and communication, right? And so by sentinels, you mean people out in the community who are as you say, "looking out" to do this early detection and to foster this communication. Who are these sentinel reporters in this program?
Dr. Jeralyn Bernier: Well, in our case, the sentinel reporters are CPRG members. We are seeking, we are in a pilot phase right now in Cincinnati and seeking to expand our experience throughout the State of Ohio through our sister networks and network of networks that we have helped establish called the Ohio Pediatric Research Consortium. There are five research networks that are focused on children's health care.
Penny Daniels: How do you think this is different from all other surveillance programs that are currently in this country and out in the community?
Dr. Jeralyn Bernier: Well, for one thing, we have physician input and interaction, which some view as manual data input but we view as a strength because physicians are actually at their computers both reading and writing data and responses. We collect information on symptoms rather than diagnoses at the point of care in the community. We are targeted towards, as Molly points out, children who are biologically and socially more vulnerable to bioterrorism and possibly other outbreaks. Further, we have bi-directional communication; it is not one-way information. So a provider can seek information through our program and will be guided towards links and informational resources as necessary. Finally, we have customized graphical output where a provider can see both their own experience and the group at large experience, even at this early point in our project.
Penny Daniels: One of the problems seems to be in medical care today that providers are just so busy. They are so overloaded. First of all, is this very time consuming and secondly, how do you motivate providers to participate in this?
Dr. Jeralyn Bernier: Right now, we are asking for weekly data collection. Ultimately, we may evolve to daily data collection, partly at the request of providers because of difficulties with memory and recall over the course of a busy practice week. But it takes about ten minutes at the most to review the data and enter the data for the week. We are studying different incentives to motivate providers to participate. Everything from reminders through E-mail, support tools that we distribute including at times computers to help them with their access to the Internet. Analyzing what type of data feedback they would like to see, what kind of informational links they would find useful and whether such items as staff lunches for the high participants or modest financial remuneration would make a difference to providers.
Penny Daniels: OK, OK. Well, it certainly doesn't seem to be very time consuming at ten minutes. What is the role of the health department in this project?
Dr. Jeralyn Bernier: The health department has a critical role. The health department, of course, is one of the two parties who wish to be communicating and their main job is to review the data as they come in and respond to those data as required. This system does not yet replace required reporting of diseases but as information is typed in, especially in free text fields, our health department personnel feel inclined to actually make contact with the providers and discuss problems as they come up. They also will create educational and informational notices and bulletins, as you can see on one of our slides. They have an alert function, which we do not yet have an example of because we would like to restrain and they would like to restrain the use of that function for true emergencies.
Penny Daniels: It seems that this is relevant to regular practice as well as bioterrorism. Is it, do you think?
Dr. Jeralyn Bernier: Absolutely. As we all know, in the current flu outbreak, parents always want to know that whatever their child is or is not going around. Instead of the provider reporting on their experience that morning or that afternoon, they can now step back from the patient's bedside over to their computer and look at their region and see if what they are seeing in their office does fit in with their colleagues.
Penny Daniels: Particularly right now that is extremely helpful. Thank you, Jeralyn.
In a moment, we are going to open up the lines for your questions, but first let me tell you how to communicate with us. There are two ways you can send in questions. The first is by telephone. If you are already listening on a phone, press "*1" to indicate that you have a question. If you are listening through your computer and want to call in with a question, dial 1-888-496-6261 and use the password "bioterrorism". Then press "*1". While asking your question on the air live, please do not use a speakerphone or a cell phone to ask your question because you won't be well understood and if you are listening through your computer, it is important that you turn down the volume after speaking with the operator. There is a significant time delay between the Web and telephone audio.
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Now as you are formulating your questions or queuing up on the phone lines, I would like to say a few words about our sponsors. The mission of AHRQ is to improve the safety, quality, efficiency and effectiveness of health care for all Americans. Two of AHRQ's operating components helped to produce this series of audio conference. First, AHRQ's User Liaison Program serves as a bridge between researchers and state and local policymakers. ULP not only brings research-based information to policymakers so you are better informed, but we also take your questions back to AHRQ researchers so they are aware of priorities at the state and local level. Hundreds of state and local officials participate in ULP workshops every year.
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I would like to take a quick moment to thank Dr. Sally Phillips, director of AHRQ's Bioterrorism Preparedness Research Program in the Center for Primary Care, Prevention and Clinical Partnerships. Sally has been instrumental in helping to produce this series. As I noted before, Sally is with us today and will be available to participate in the Q&A portion of this call.
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Now let's go to questions from our audience. The first question is on the phone. Steve Foster is calling in from New Hampshire. Hi Steve, thanks for joining us. What is your question?
Steve Foster: Thank you very much for taking my call. A question. I work for the state health department in the State of New Hampshire. I am involved in doing planning for bioterrorism. My question deals with what education tools are available for protecting the staff of the providers as well as providing information to the parents who bring in the children to the providers? Thank you.
Penny Daniels: Who would like to take that question, take the first stab? Dan?
Dr. Dan Baden: This is Dan Baden. Depending on the topic that you are specifically talking about, we try and have information available for several different audiences, whether it be the patients themselves or the parents of the patients or the staff within your healthcare setting, we try and gear, that is one of the things that our emergency communication system does in particular. We try and develop messages for each of the specific audiences. We additionally develop messages for public health professionals. We also do it for government officials, whether it is at the state, local or federal level. We also do it for media in addition to the audiences you designated.
Penny Daniels: So if people want more on that, where do they get it? From the CDC Web site or where?
Dr. Dan Baden: Yes, we have developed Web sites for many of these topics and we are continuing to do that as we go along. But on those specific Web sites, you can find information for all these different audiences as it is developed.
Penny Daniels: OK Dan. Thanks a lot. Michael Olson is on the phone with us now from Minnesota. Michael, what is your question?
Michael Olson: Yes, I was calling about the CDC Clinician Outreach and Communication and Information. Specifically, when you get those E-mails that links to the CDC Web pages, a lot of times much of the text there is the same things you have seen before. I was wondering if there was some way that they could change the color of the font or whatever for the updated information on those pages?
Penny Daniels: Dan?
Dr. Dan Baden: I will see what we can do about that. Thank you very much for the feedback.
Penny Daniels: What color would you like?
Michael Olson: Well, just something so we knew what the new information is as opposed to trying to read through it and trying to guess which is new and which is old.
Penny Daniels: OK. Maybe green light for "go" or something like that. Take it back to the folks at, Jeralyn?
Dr. Jeralyn Bernier: I would just like to add to that. It sounds so basic, but it does seem important that in our health department bulletins we have found the need to have three different levels of color and boldness for the different level of concern of the clinical problem being addressed.
Penny Daniels: Of alertness. Yes, that is interesting. Thanks Jeralyn.
OK, Tom Metz is on the phone with a question for Molly. Molly, can you give us a bit more information about the disaster tool kit?
Molly Hicks: Absolutely. Thank you for asking the question. It was produced with support from the Robert Wood Johnson Foundation and it was actually a hard copy folder that we sent out to about 75,000 pediatricians, family physicians, nurse practitioners, policymakers, and state legislatures. We really tried to take a broad-brush approach and mail as many copies as we could produce out to frontline providers. Unfortunately, we mailed all 75,000 copies out. The good news though is the material that was included in that tool kit is available on the academy's Web site. Specifically, let me draw your attention to some of the few things that were in the tool kit that you may want to look for. One is a fact sheet entitled "The Youngest Victims." This is a fact sheet that really summarizes the unique health and mental health needs of children. It is a very good thumbnail sketch. It is written in a way that a broad range of folks can understand it and again the title of that is "Youngest Victims".
The second resource that was included in this tool kit, and again, these are available on the Web site, is a piece called responding the children's emotional needs during times of crisis. This provides some tips for providers and parents and others that deal with children about children's unique mental health needs. It also gives some very concrete advice about things such as how much TV should you watch with your children during times of crisis. A child's ability to absorb information and respond to information varies by their age and those kinds of topics are addressed in the fact sheet.
One of the other pieces of information that was included in the tool kit was a poster from the CDC on the identification of smallpox. That material I know has been updated since and is available on the CDC site which you can link through our Web site. Again, the Web address where all of this material is located is www.aap.org/terrorism. I am sorry I can't make took kit copies available, but the content is available to you online.
Penny Daniels: OK. The next question is from Dennis Reid for Dan. Dan, how can we encourage clinicians, Dennis wants to know, to participate in local health alert networks? He says, "We have experienced high interest by county agencies and hospitals, but low interest from physicians and other clinicians."
Dr. Dan Baden: I think a lot of the drive for getting clinicians involved is the public themselves. When people come into a clinician's office and are asking questions, whether it is about anthrax or SARS or the flu, the clinicians are going to be looking for information elsewhere. Whether that information comes from CDC, their local health department, from other organizations, it is the clinicians reaching out trying to get information. At that point, the local health organization or CDC can form that link directly with clinicians and encourage their involvement in future activities.
Penny Daniels: OK, thank you. We have Ahmad Dean from Nebraska on the phone right now. Ahmad, could you tell us your question?
Ahmad Dean: Yes, sure. My question is directed to Jeralyn Bernier. My name is Ahmad Dean from Omaha, Nebraska, the Douglas County Health Department. I want to know that this Web site for the symptoms-based surveillance system, is this available on the clinical level or is this accessible only to the physicians? The second part of my question is that which software you are using for making the graphs for this system? Thanks.
Jeralyn Bernier: Thank you for your question. I'm not sure that I heard it all so I might ask you to repeat it. I think you are asking is the surveillance project available to only members or can anyone see it online? I can answer that right now. It is a password-protected entry because we are concerned about the security of those data. That one would not want to tamper with those data and generate panic. We wanted to make sure we had good data integrity. We do have an example of how the program runs that we can make available through AHRQ.
Then I did not understand the second phase of your question if you could repeat it.
Ahmad Dean: My second part of the question is which software program are you using for making the graphs for the symptom-based surveillance? Which software are (unclear)? What system are you using with that surveillance system?
Dr. Jeralyn Bernier: The program was developed at Cincinnati Children's through our Informatics Division. I think the programming language is called Sequel. There has been some discussion whether we should change it over to Java, but we download our data from their Oracle Database and we do our analyses actually in Excel at this point. Eventually we would like to add automated analyses that would generate signal and we have not yet developed that but that would be in SAS software.
Penny Daniels: Jeralyn, thanks. Michael Pathis from New Jersey is on the phone now. Michael, what is your question? Michael, are you there? I don't think we have Michael so we'll go on to another question. This one is for Molly from Kay Godby. "Are the treatment guidelines and policy statements for pediatrics online?"
Molly Hicks: They are. We have them available on the Children, Terrorism and Disaster Web site. You will see when you access the site that the material is defined or is placed up with a couple of different ways. One is by resource so you can search by Academy resources, federal resources or other medical journals. The second way you can search is actually by subject area. For instance, if you were to check the subject area entitled radiologic event, you would find the new policy statement on radiation disasters and children and this is the statement that includes very specific recommendations such as the need to stockpile potassium iodide within homes within ten miles of a nuclear power plant. That is a very specific example, but that kind of clinical guidance is available online, both under "Academy Resources" and "By Subject" on the Academy Web site.
Penny Daniels: Thanks Molly. Michael Pathis is with us, I am told now, on the phone from New Jersey. Michael, are you there?
Michael Pathis: Yes, can you hear me?
Penny Daniels: Yes, very well. Tell us your question.
Michael Pathis: Thank you for taking my call. We are very interested in learning the panel's ideas regarding legacy systems. It is important to know sometimes background information regarding the population being looked at for potential bioterrorist events and how would a legacy information system possibly help? Thank you.
Penny Daniels: Who would like to take that question? Anyone? Molly.
Molly Hicks: It is a question a little far a field from the work that I have been doing on the preparation for children, except now that I say that out loud, I think that it would be important to know the pediatric population in your community. Something as specific as where are the children during the workday? I think a lot of the evacuation plans are based on the fact that parents are going to be at work, but children are not always in one location like that. You are going to be dealing with daycare facilities, both affiliated and unaffiliated. You have got schools, you have got in-home providers. You have got a range of placement area and to have a better sense of where children are will allow you to respond better in case of an unforeseen emergency.
Penny Daniels: You have children in different locations within the same family and some have after-school activities. It is a problem.
Molly Hicks: Absolutely and you have also got the challenge of how do you connect the parents with the children and how do you deal with reunification and evacuation and so having a good handle on what the families look like I think would be important.
Penny Daniels: Dan, I have a question for you. Sometimes it seems that the CDC has so much information available that it is really overwhelming for people. How do you suggest that people best navigate the available information?
Dr. Dan Baden: OK. In reference to clinicians specifically, we made an effort to try and develop clinician-specific Web pages. The idea when we have gone into this is that clinicians don't have time to go through the wealth of information that is available. We have tried to make it so that you can go in, find what you want, read a paragraph or two and get back into the patient's room within five minutes. We have tried to develop a standard format for the pages that we have developed and try and get clinicians used to that to also ease their navigability.
Penny Daniels: OK. I have a question from Keith Wilson for all and I am going to read it to you because it is a long question. Keith comes from a law enforcement background, he says, which according to Keith has been notoriously parochial in information sharing. I want to make sure this comes from Keith and not from me. "Do you anticipate encountering the same problems when it comes to information sharing across state or county lines or even separate commercial entities?" Anyone want to take that one. Not to slam the law enforcement community out there or anything.
Female: I think for the pediatricians there are some issues about state jurisdiction and information sharing and also responding in times of crisis. If I am a pediatrician on a border state or on the border of my state and there is an emergent event, can I cross that state and provide care? Can I provide my expertise? What is my liability coverage? What is my familiarity with my neighboring state's public health department? I think that it is certainly an issue we need to be considering but there may be others on the panel who can maybe speak more directly to the question.
Penny Daniels: Are there privacy concerns now? I mean more and more with HIPAA, there are so many things to think about in terms of privacy. Jeralyn?
Dr. Jeralyn Bernier: Well, in Cincinnati we have dealt with both issues. The privacy issue I guess is a non-issue. We had collected (unclear) are aggregated an anonymous. The health department can get back to a provider to enquire about cases reported, but there is no patient information transmitted and then they also have their public health exemption to protect the health of the public.
The crossing county lines issue is an issue we are tackling and learning how to navigate. We developed our program in association with the Cincinnati Board of Health and have the full support of the commissioner of health in Cincinnati who corresponded with the health departments related to our provider members. I believe there are at least 8 health departments involved and the regional health departments either participate or allow Cincinnati to investigate those problems as they arise. We will be dealing with this at the state level as well.
Penny Daniels: OK. We have Mary Houstein on the phone from Pennsylvania now. Mary, what is your question?
Mary Houstein: Hi. My question is for Molly Hicks. I want to know about the pediatric terrorism preparedness resource. Is that a disk that we can get through the Web site or is that something that we can just download? We would like the information for the mental health piece for our mental health response team. I represent the Office of Mental Health and Substance Abuse for Pennsylvania.
Molly Hicks: Well first, thank you for your work. Mental health is often; we have found in terrorism planning, an unrecognized field and we certainly appreciate your work and the work of others to bring that attention to the matter. The Pediatric Terrorism Preparedness resource is one of our resources that is still under development. So unfortunately right now I cannot make the CD-ROM available to you because we are still developing the content. When it is released, and again we expect that in the next year to 16 months, it will be a CD-ROM that we hope to widely distribute. It will also have an accompanying Web site where we will be able to post updates and the material will be downloadable. That is a resource we wanted to flag as one that is coming and we hope to have it out as quick as we can once all the support is in place and we are able to proceed ahead with the efforts.
In the meantime, though, I would certainly encourage you to check the Academy's Web site for some of the mental health resources. We don't obviously have the full range of the Pediatric Terrorism Preparedness Resource-type compendium, but we do have quite a bit of information on mental health. There is a section on the Web site called "Psycho-social Aspects of Terrorism". I would certainly encourage you and others in the audience who would be interested in mental health matters to check there, but we will certainly keep that Web site posted and the audience posted when the resource is made available.