Annual EMSC Grantee Meeting

Family Representatives

Family Disaster Planning

June 20 – 22, 2006

LEE PYLES: We can deal with an emergency. And I think it's important to stay fixed on the overall goal and the vision that we want EMS for children to work cohesively. We want it to be part of the overall EMS system. We want the people that do EMS all the time to have a really good understanding of children. And we want to optimize health for the children in the communities. So the project goal for us has been to improve emergency and disaster preparedness for children with special healthcare needs.

In practical terms, for MEMSIS, that means children who have a risk for a unique emergency. Someone with mild asthma, everyone expects the ER doctor to know what to do. Someone that's been intubated, to treat their asthma several times, is going to be tricky and we want to be certain that the emergency physician knows that right away. This child walks in the ER. This is a very touchy asthmatic who has a history of getting ill very quickly. That's the kind of information that needs to be conveyed.

And so the EMSC resource center several years ago now put together a paper where they said: All these children with special healthcare needs need a written emergency plan. And so a summary is not a plan. Is one of the points I want to make. We want to keep the plan updated and in a safe place. We want to include training for everyone who needs it.

And so this was an objective in the EMSC five‑year plan to develop model care plans. And then American Academy of Pediatrics, in 1999, the COPEM, you heard from Rob Sapien this morning about the COPEM. COPEM put together a policy along with emergency room physicians, American College of Emergency Physicians, that said let's make care plans, let's all use a standard summary. So whenever anyone walks in an ER it looks the same to the emergency room physician they know where to find allergies. They know where they're going to find the list of medicines.

And that's what we've been working on.

So this is a picture of Yellowstone Canyon, and the point, there are two points. One it's to tell me to slow down if I'm racing, but also it's just that when you're at the top of the waterfall is not the time to decide there should have been signs and barriers. There should be planning. And so emergency plans should include what supplies are needed, what food, the back‑up. Are you going to be able to stay at your home? How long would you be able to go without electricity without water, will there be, is your back‑up plan going to be the child actually would have to be admitted to the hospital because you won't be able to sustain what you're doing at home without all the resources?

So will you need emergency housing? Do you have your emergency summary ready? And everyone needs to do this, just as a reminder, need to know where you would meet your children in your neighborhood and where you would meet them if you can't get to your neighborhood.

And I can tell you after 9/11 it was a little bit scary to my kids. They were elementary school. And having this discussion, you know, made them think

that it was real. You know, you have to know how to get to your grandparent’s walking. Your mother and I may be at the hospital for days if something really happens. And we had that discussion. So this is from the AAP website. If you just troll around you'll be able to find it. But the basic emergency supplies everyone should have.

Three gallons of water per normal person. If you have someone in diapers you probably need more water. You need to have enough diapers. You need to think those things through. You need to help people around us think it all through. The normal things about radios, flashlights and batteries. I mean basically all we have to do is make it mandatory for everyone to be in boy scouts or Girl Scouts. And we'll get the population educated.

You have to think about food for the caregivers, for the child. Think about formula, having a nonperishable way to store it so that it can be stored long‑term and water to mix it with if you do store dry. You need an emergency supply of the normal medicines.

What about insulin? What are you going to do if the power is out for a long time and the medicine has to be refrigerated? People have to think those things

through in advance. We have to think about resources to find additional medicines for when the original supply runs out. And there is an AAP recommended

first aid kit. Although, when I was looking on the site, it would appear that you need to buy the first aid poster to get to know what it is.

The hearts even works, that's all I can say. At any rate, some of the important things in the first aid kit, I would tell you the thing that I find lacking in homes

the most often is a working thermometer. And it's something to really be stressing to people when you're out teaching just how often it really is needed. But thinking about having supply of Tylenol and Advil if the child's allowed to take it.

And then back‑up. If your plan includes, grandparents would step to the plate, do they know how to take care of the trach, have they been the people that

always say no, I'm not going to take care of that part. Can you teach these people who would be willing to help you enough that they'll really be able to pitch in? Those are going to be some of the things that you have to think about.

Would your nursing help? I can tell you from thinking some of these things through, you know, conceivably your nursing help would be able to help you if you had people lined up to take care of their normal kids. And it may be that kind of a net that you would have to think about building, at least

have the discussion.

This is a clip from our website that shows how we can keep track of the resources that a family needs. Where I would like to head with this, we actually have the ability to search the site such that we can find every child that has to have electricity. And so the biggest stumbling block to real preparedness is that we still have only 1% of the special needs children in the twin cities and Minnesota in our site. And so just in terms of doing a federal project, we're thinking it through. And so people could change this, update it. You know, their child is better. They no longer have to have a generator because they no longer absolutely have to have electricity.

Okay. So on to the summary. The most important thing according to the emergency physicians is that it's brief. Any time I go to pediatricians and talk about emergency planning, we end up at seven pages. And the emergency room physicians say no, no, front and back, please. You know, we want to be able to ‑‑ we have to figure this out in 45 seconds. And so brief is number one. Number two is having it up‑to‑date and accurate, that it's a huge issue for when it's really being used. There's a little bit of discussion about the issue of accuracy and who is going to really keep it up. And I want to involve you with that later. We have to identify the population, the standardized form we've talked about. And having a way to have 24 hour access is important. Training again and again I always stress the issue is that it's an emergency summary, an emergency information form is only part of a plan. People should train on the plan.

The summary should really be prepared together by the primary physicians, the family and the subspecialty physicians depending on circumstances that might even involve school nurses and respiratory therapy, all sorts of different people. This is what an emergency information form looks like. First of all, at the top are the American College of Emergency Physicians and AAP logos, American Academy of Pediatrics. And those two groups have endorsed this form. You can actually get a PDF or a Word file of a blank form from the AAP website if you wanted to fill one out.

And the important points then are shown would be the demographics, the physician providers, diagnoses, procedures and meds. And then you go on down and talk about baseline physical findings, baseline vital signs. And so the issue being; what's normal for this child.

And this is one of my favorite things. Immunizations. This is the AAP process. We got buy in from yet another of the 40 committees in American Academy of Pediatrics by including that, because it made the form meet the criteria to be used as a camp physical. And otherwise you wouldn't worry quite so much about immunizations in an emergency. But it was a matter of horse trading to get the thing through. And so this is a schematic of the website. On the one side there's the data suite, which includes the data entry, how it's validated, which is the computer workings, and then on the other side is the ability to back it up and analyze things and the emergency access. And I'm going to show you all that in a minute. And then down at the bottom we can write reports actually. So the same as like a state EMS database, for instance, or a hospital database. In fact, we have an automatic report on who has used the emergency access to this site. All we do is hit a button and we can generate that report.

So the website is at MEMSIS.org or .com and I know several folks have gone to the site because I get notified if you go out there. And that when people take the tour or if they use the emergency access, it generates a notification to me and Jahad right here, Jahad is the grant nurse coordinator, and he's also notified. If the break the glass access is used, so the red button that says emergency access, if that's used to get to a child, the parent, if they have e‑mail, they're notified. So there are three emails if break the glass is used. The parent, me and Jahad. And if we see that it sounds like it's screwy, then we can take action.

Amazingly, that has not happened. I mean, even you know right there on a university campus, there's been no inappropriate access to this website.

UNKNOWN SPEAKER: We select I'm the nurse giving the shots and I want to know this child is he special needs is in here, I can go into that? Emergency access.

LEE PYLES: You can do that or the parent could let you use their screen name or they could give you access. If you regularly care for that child, they can give you access. Once we've set up a screen name and a password for you, other people can then H ICU, so the person you see on Tuesday afternoons could also pick you and let you have access to that child's information.

The thing is organized by healthcare entities. So, for instance, ped cardiology at U of M, all the doctors are sharing access and our nurse practitioners, so there's a group of patients that are all shared, plus their primary care physicians have access to each individual patient, if the parents agree to it. And they only have to have one password so that the parents are not, we're not overloading anybody with multiple passwords, thankfully. And that costs some money. In the initial start‑up. But you know we were talking this morning, or maybe yesterday already, about how people should have bought software as opposed to inventing it. It was in one of the sessions. And so we did buy off the shelf from this computer company, we bought the security suite, which held the price down a good bit.

UNKNOWN SPEAKER: It's like a universal health record?

LEE PYLES: Well, it's only a summary. It's only a summary. Here's the page where you can take the tour, and we're going to see if we can get out there. But it talks about privacy and security.

And so the study that we actually did was to look at children with congenital heart disease, mainly, but children with, born with heart problems and whether we could actually improve their emergency care. We wanted to see if we could decrease cost of visits or improve the parent or provider comfort level. So the children either had heart surgery were treated for heart failure or were treated for an arrhythmia. 168 children were enrolled. The fun part of this was we actually used a coin flip because we had three ‑‑ four ‑‑ four nurses enrolling people for this study. And so actually decided the best way to randomize was with a coin. We ended up with 94/74. My tenth grade could tell you it's not significantly different, because he and I just did that last in his algebra two.

And at any rate, enrollment was from October of 2002 to end of September 2004, and we tracked the children for another six months after that and now have the data ready for analysis. Two IRBs were involved. HIPAA is an issue to a lot of people. One of the things that's interesting to me, 90% of all of the families agree to break the glass entry. Said yes we want it possible for anybody that knows my child's first and last name to get to his information. So all of the people,

as we consented and before we told them if they were going in the site. We asked everybody would you allow break the glass, and it's 90% of 168 people.

And so at any rate, we have done all the usual things for HIPAA. Probably the most important issue, if you, when you get the lawyers going, this data officially belongs to the families. And the families are not what's called a covered entity. Meaning HIPAA doesn't apply to them if you really split hairs. But at any rate, we feel like you still want the site to operate in a safe and reasonable fashion. And so it does. The transmissions are encrypted. There's ability to see exactly who has been in and out of the site, even beyond that immediate notification and the emails that I talked about.

So the results of the study, there was one child who was a control patient who presented to the county hospital emergency department with complete cardiac arrest, and was not resuscitatable. So that's the only child that died in the study, you know, out in the community. Several children actually died in hospital with subsequent operations. There was one bounce back or recidivism which surprises me. I would have expected more. But that's a very low number compared

to other published accounts. There were 188 emergency visits, and the disturbing part of this is we actually only used the site or attempted 17 times. There were three times that families wanted to use it and the ER doctors said I don't want to fool with that. You have a simple problem, I'm not going to mess with it.

Which was kind of interesting.

UNKNOWN SPEAKER: (Inaudible) aware of it (inaudible) had no idea that the parents didn't know (inaudible).

LEE PYLES: Well, we, I think some parents forgot, too, that's what some of our information suggests. I had one family in particular said they forgot until they looked at the diaper tag and they saw the tag we had given them. Everybody gets a credit card sized tag with the logo, Claudia's EMSC logo and the website address and we don't write screen names and passwords on it, but there's a spot like on your credit card that's roughed up so you can. And that's up to the family. Whether they want to write it down right there or not.

At the start of the study 26 people said they were keeping a history already, and then that number did increase. 102 people promised to update. And it turned out it wasn't quite that many. At the end of the first year we had 23 emergency visits already, and we realized then that we had to step up efforts to get people to use it. But at any rate, we felt like people were more comfortable because they had the summary.

I think it's easier to understand in the graphic form. The patient assessment of hospital confidence, if you look at the second and fourth groups, those are percents. And essentially 40% strongly agreed they thought that the hospital was competent to take care of their child with special needs. That number didn't change in the course of the intervention. But undecided definitely decreased. And so the thing that I thought was interesting was any family that didn't have an opinion, by the

time they had taken care of a child for one to two years, they did have an opinion. The apparent assessment of provider comfort, it's pre-hospital. The second block is hospital. And again yellow was neutral or no opinion. And it went way down in the course of the study, agreement that folks knew what to do went up. This one is actually worded ‑‑ this was kind of a validity check to make sure that people were reading, was actually worded the opposite way. So blue and green are to the good. So whether you thought they did a bad job, like I say, it was the reading test that the psychology people put in.

This is the big one. I feel that the comfort level of the hospital personnel improves. And so this is in percents. There were about 100 respondents in follow‑up, and basically the last column is change. About 25% more people agreed. So roughly a quarter of the people that responded said yes, I really feel like I'm seeing a better comfort level when I walk in and say here's my information. You can go look at it if you need to. In terms of the study, the cost per ER visit was higher for the study patients. It turns out there were more sick patients. So my case control methodology didn't work perfectly well.

There were roughly twice as many hospitalizations. And when the EIF's were used, there were a lot of hospitalizations. The ED visit cost, this is actually pretty interesting.

So for control patients, in the general ER. Now, I don't know for sure if it has to do with doctors or not, but in a general ER as opposed to a pediatric ER it actually costs more. And if the EIF was used, it cost much more. And it turned out that they had some sick patients. I've searched very hard to try to make certain that these people didn't get scared by the EIF. And there really is not data to support that, I'm glad to say, that what it really looks like is that there were more relatively

sick people.

This sort of tells the story, the general ER now is green. And this is the number of medicines. So you see that we had patients with 15 medicines, okay. Just imagine being the doctor. Here is my med list. And at any rate, there were many more high numbers of meds in the general ERs, versus pediatric. And then we're looking at numbers, white column is numbers, dollars expended per visit but you can see that it really, we're actually stacked towards ‑‑ green is on the upper

end more than it is yellow.

This is what's been called visit importance. And this was actually an empiric judgment. And I'll tell you that a level four visit is they came in the ER and were resuscitated, went to an ICU, were obviously very ill. A level one visit was they turned out to have an earache or a tummy ache. And two and three were in between. And so at any rate, just in terms of trying to make sense of all of this, there were much more level three visits if the EIF was used, and I think that's part of what is driving the increased cost when we really crunch all the data.

The lessons, then, I think, from the study, on to the Susa's time, I'm going to wind up, many visits for children with non-cardiac problems, their feeding problems, people were very worried when their child with a heart problem just had a EIR. A number of children used a lot of resources if they had multiple congenital anomalies and developmental disabilities. If transportation was a problem, they went to the ER. Severe heart disease, but actually presence of a G tube, either the G tube or the GU reflux was ace major driver, and the people that had multiple medicines had multiple visits.

This is a different look at the cost issue, just looking at a number of major labs. So this would be a CBC, a chest x‑ray, set of electrolytes, abdominal x‑ray, blood culture and a CT of anything. So those were the six things.

And the average was 2.2 tests per person. And so at any rate, in the general ERs, there were actually less labs done if the EIF was used. And that saved my study, has a P value of .045. But the bottom line is it really didn't appear to save money to use the EIF. It improved everybody's level of comfort, but it still doesn't, from the small end that I have, I can't prove that it saved money.

The key then that we figured out about halfway through was that we had to do a great job of selling MEMSIS and the EIF to the emergency departments that needed to use it. And that's when we started, we built the tour on to the website. Some of you have looked at. And really start, spend even more time out stumping, and I gave talks every place that the emergency doctors would listen to me.

Parents that really use the site that updated their children in general were more sophisticated. It was more a group of the people in this room as opposed to a run‑of‑the‑mill parent. And the thing I'm disappointed about that we're working to remedy is that there was no one with, you know, English as a second language, no English using it. You had a few people that were bilingual that were using it. But no one who could not speak English. So one of the things we have underway, we're making a video in English that explains the website and the whole idea of emergency planning. We're making it in Spanish and in Mung, which is our Southeast Asian culture in Minnesota.

And then the last issue really is that this idea of MEMSIS as a safety net is still under exploration. Right now at our hospital, the project currently is that we are trying to discharge people from the hospital with this form. It has not occurred as of yet. There's a lot of stakeholder building that's still going on that as we build interest and consent and momentum, the computer guys are behind the scenes making this move out to the MEMSISwebsite. And the IRB is okay with it. The hospital is okay with it. And to me this is the future, where a child will have a summary in electronic medical record that will become a story out on a website someplace else so that we don't have to worry about hospital privileges to go look at it. We don't have to worry about, you know, the fact that you don't want your

site testing available to everybody who could possibly, you know, look at the whole hospital electronic medical record. There are just a myriad of issues that involved, even something for HIPAA called the Least Necessary Standard, which is you're only supposed to give out the data that people need, that there are a myriad of issues that are actually solved by using a summary as opposed to just handing the record to somebody.

And it's organized. And then the bottom of it, again, looks very familiar. That we talked about anticipated tertiary care, what the discharge pharmacy would be, asking if there's an advanced directive.

And so at any rate, we've expanded. We have children with inborn errors of metabolism, we didn't tackle cardiac transplant in the first study. We have children with intractable seizures that are coming from Jill let children's rehab hospital, and we're just starting with hematology oncology. And we've been very, very lucky

over the years. This has been supported by now two targeted issues grants from EMSC. And a number of people have worked on it. I introduced Jahad. Claudia Heinz has been a big part of this all along. We had three previous study nurses who have all graduated on to other things. Joe Martinez was the EMSC coordinator

in Minnesota with Claudia for quite a while. And then a number of doctors and hospital administrators that have greased the skids. And so a lot of sales work.

A little note for Image Trend. Some of you that are in EMS have heard of them. Image Trend is the programmer for my study from MEMSIS, but they also run the Minnesota EMS database and they evidently now have about 20 states that have their state data with image trend. So they're very active with the MEMSIS

program.

This is a quote from Baden Powell, the founder of Scouting. And Baden Powell said: You have to be prepared, and you think out any accident, which we won't say anymore, but the idea being to not be taken by surprise.

So and again I just ‑‑ I was really impressed with Alaska. I have to tell you, not only the scenery, but the fact that those people are up there making a difference. So any questions?