HRSA/MCHB 2005 FEDERAL/STATE PARTNERSHIP MEETING

PUBLIC HEALTH ACROSS THE LIFESPAN

Translating the Findings from Child Death Review and Injury Prevention Planning

CAROLYN FOWLER: Hello everybody. This is the last 20 minutes before lunch, so I'll try to get through it in time. And please excuse me if my voice disappears. I've had something, courtesy of airline travel, for the last week or so.

So my job is to talk about translating review findings into some sort of prevention, both injury and general prevention.. And the assignment that I got from Terri was to weave together some of the wisdom from the two previous talks to add a few threads that we've gathered in many years of CIT in Maryland and to look at this as a prevention professional, to see what sort of recommendations or key concepts I can give you for future action.

So the first thing I want to ask you to consider, as we go through the next 15 minutes, is the answer to this question: Do you think the dead can speak? And we'll return to that in a little while.

The first key concept that I want to share with you today is the concept of committing to asking and answering the right questions. And the work that the Maternal Child Health Center has done is going to get us a long way to accomplishing that. But the greatest challenge for prevention is having people ask the right questions in the first place, so that we have the right information we need to think about risk reduction.

The review team challenge that we have, when we look at child death review teams, is getting teams, especially young teams, to commit to find information about all the components of what we call the epidemiological triangle to focus equally as variables as the host, in other words the child, the child medical history the life to that point, looking at other human individual factors, looking at the agent of, typically in this case we're looking at sleep safety, we're looking at sleep environment, and in fact the agent of injury, when we talk about injury, agent of injury is energy transfer. In the case of these deaths, the agent of injury would in fact be energy withholding. So that we actually, when we talk about injury, we talk about the imposition of energy above a threshold of tolerance, or the deprivation of energy below a threshold of tolerance. In this case it's deprivation of the lower threshold of tolerance. But then finally looking not only at physical environment but looking at social environment. And child death review is completely incomplete without a rigorous examination of social environmental variables.

Now, when we look at real world child death review, we have two ways that data can go. If we're pessimistic, many people will say that in fact some of the key data that are collected in reviews are ignored or else they're underutilized. They can also be biased. I'm not saying the teams are biased but they may be biased in terms of the collection, in other words they're collecting what's available. They may be biased in terms of the analysis, or in fact the data which are collected may be biased by virtue of who is collecting them.

So, for example, if the police jurisdiction in this area has a very who is responsible kind of approach, their data may very much be biased towards human environmental factors. Data may be misinterpreted. They may be used to justify an end. I think we've really gotten beyond that, but some of the early teams were very investigative and they were used to justify an end or the data can be used nonstrategically, used in isolation without enough supporting evidence, maybe just used to have a big press campaign and nothing following it. But in an ideal world where we will get to is that the wonderful data of child death review teams will be used strategically for action.

The challenge for us is that action requires competency development and that begins right up front with the convening of the team. If you look at what is contained in most state statutes about child death review, you will not find a specification in the statute requiring somebody with prevention expertise to be on the team. You will find them on teams. If people have the insight to include them, but the mandate ‑‑ I don't think there's a single state mandate which requires the presence of somebody with prevention expertise on the team. And that clearly is a glaring omission.

So if we want to move beyond counting data, we can find ways to use data in the real world. The first way to use data in the real world is accurate identification and uniform reporting of every child death. That's an absolute critical step we need to take. Looking at the improvement of investigative systems. Not only the CFR report but the push that we're seeing now in this country for a national child death investigation instrument, CDC is pushing that, the national association of medical examiners is pushing that to get consistency. We have over 2,000 death investigation jurisdictions in this country. This does not make for good quality standardized data. Improved services for families and communities another aim that we have. Improved communication and linkages among agencies and a lot of people think this is a soft outcome of CDR but having been involved in this for years and years I think one of the greatest benefits of CDR is the ability to create networks of people and to engage people who normally would not be engaged with each other a regular basis.

We need to use data to understand risk and protective factors in child death, and we can also use data for changes in legislation, policy and practice to prevent deaths and improve child health and safety.

Now, clearly where we have an issue of high exposure and poor outcome, that would suggest to us a priority area of action. For example, the area of infant sleep safety. We know that we've done quite a good job with back to sleep, however, I would like to show you this picture that one of my colleagues took. This child is indeed back to sleep. Recently in my county we've had numerous deaths of children on their backs, but they've been on their backs on sofas on their backs in adult beds so many people got the back to sleep message but we don't have a comprehensive message of sleep safety as well as sleep position.

I wanted to say something about SIDS versus SUDI this is actually the Maryland picture. I think this is the way that many of the medical examiner systems are moving. I'd like to explain it to you. In fact, in Maryland, SUDI is not classified as natural it's classified as undetermined death. It's undetermined manner. So essentially this is the way we're working in Maryland. We're a statewide medical examiner system, so that's an advantage.

Essentially, both are diagnoses of exclusion. So essentially if you are working with a coroner or medical examiner system which does not do an autopsy on an infant death they have no business calling either one of these. Because you cannot have a diagnosis of exclusion without the methodology to exclude anything. Does that make sense to you?And so you know we, many of us take for granted the fact that we have an autopsy, but that is not the case, necessarily.

So SIDS and SUDI look similar with negative autopsy, negative external examination, negative full autopsy, negative, in Maryland we do metabolic screens to look for full autopsy. So in addition to that they both will have negative toxicology. And when I say micros, we do brain cuts, hot cuts, all that kind of stuff.

This is where SIDS splits out from SUDI in Maryland to be called a SIDS the physical environmental screen has to be completely negative in terms of co‑sleeping or unsafe sleep environments. There also has to be a negative social environmental screen. You know, a child of a ‑‑ a parent with a positive history of substance abuse, where there is previous abuse of neglect or involvement in this child's life, previous children, neglected or abused. Lots of red flag kind of variables. Certainly in Maryland we'll move this out of a SIDS category. If we find anything positive, anything significant, positive in physical and social environment. This is where CDR has really moved in working with the medical examiners to rethink the way they call SIDS.

The difference with SUDI is something will come up on either the physical or social environmental end of the screen. That's the way we call it. In fact we've seen this dramatic decrease in SIDS but in fact it's not dramatic because we've seen this increase in SUDI.

In my county, in one year we've had 15 sleep‑related deaths. And we are increasingly looking very carefully at physical environment.

I want to show you, when we say, okay, we have something wrong with something; there's more than one way to use the data. I would ask you to read through this quickly, but typically we get stuck in using data for identifying, defining and measuring and the problem sometimes for delivering prevention programs, but there's all sorts of ways to use data. For example, using it to fund our programs, finding out what people think, know or believe about this issue. Using the data to find out what the barriers are to change and finally using it for advocacy.

The second key concept, trust me, I'm not going to spend that much time on all the key concepts ‑‑ the second one is to identify modifiable variables which would seem obvious. But I want to show you an extreme example. Those who have any injury training will notice this as the (inaudible) matrix, risk factor analysis tool that we use in injury. This is child pedestrian injury. You will see behavior highlighted in red. You'll see the complexity of the etiology of child pedestrian injury. Most of you will also know that a child is physically cognitively incapable of being a safe pedestrian until the age of nine. And yet up until the early '90s most of our injury prevention for injuries was altering the child or child's supervisor, which is why we were so spectacularly unsuccessful because we've been trying to alter something by focusing all of our attention on essentially nonmodifiable variable.

Now, adequate review of risk factors includes both intrinsic and extrinsic risk factor analysis. So issues such as developmental level, pre‑existing conditions, both physical and cognitive. Issues within the physical environment. Issues within the social environment at three levels. The individual and family level social environment, the community social environment and the systems or wider, systems social environment.

It also looks at injury patterns and outcomes. We actually don't as a prevention person I know SIDS is not an injury I know it perfectly well but for me I look at it the same way as I would a suffocation death for example. So we need to say are these patterns and outcomes comparable with the history that we have? Both in terms of developmental ability, the amount of force applied, because we're trying to then separate out intentional from unintentional death and also we need to look at the issue of exposure, because even if something you know may not seem to be a huge issue to some people, if almost every child is exposed to an environment which has the potential to kill, then we have to take that exposure very, very seriously.

The bottom line for prevention, though, is that when you have intrinsic individual risk factors present in the person you're trying to protect, whether that's developmental issue, it can be a ‑‑ it's a life span. The importance of changing environment or looking at policy dramatically increases. Once you're dealing with intrinsic risk, simple health education approaches have very little chance of being effective.

The third key concept is what I call aiming for positive ecological balance. It's an old epidemiological concept. It says the epidemiological triangle can be thought of as a seesaw/teeter totter, where the fulcrum is where the other two move. To give you an example of negative ecological balance, what happens in this concept is that the environmental conditions favor the agent or the vehicle. So, for example, we don't design roads for children to cross. We design roads for traffic flow. So pedestrians and children are in a state of negative ecological balance in the roadway.

Comfortable with that concept?

So the challenge for preventionist is to modify physical and social environment so that the environment protects the vulnerable. And that is our challenge as preventionists, to look at policy advocacy and change to allow us to do that. Now to improve ecological balance for any vulnerable group, and we see it at the other end of the life span, in the elderly, particularly, we need to focus on physical and environmental social change. Many of the risk factors we see in the elderly, they're not in ‑‑ they're in social isolation, depression. You can see this in some single mothers. So the concept of improving ecological balance holds across the life span.

The key prevention challenge here is that identifying intervention points is not an intuitive skill. And we often see what we know. So, for example, you know we see that somebody didn't know to do something so we assume that we should tell them what to do. On the other hand, we can make assumptions it's like if I tell you you need to exercise four times a week is that really the issue? No the issue is we need to get our lives under control so we have the time to do it. So the key issue for preventionists is to say what's the actual key variable here that needs to be changed?And many, many CFR teams we find need prevention strategy training and technical support. Harbor View at the University of Washington in Seattle is doing some work providing technical assistance on prevention decision making to CFR teams, and I think that's a way to go in the future.

The next key concept is do no harm. And this is really important when you're dealing with victims who are in active developmental phase. When I say do no harm we mean two things. Firstly, we need to anticipate unintended consequences of our interventions and secondly we need to remain vigilant for those negative consequences.

Now, the obvious principle of injury prevention is to separate the child from the risk factor, or to separate the victim from the risk factor. Here the risk factor is a large, very appealing red button. What will the child do with this red button? Put it in his mouth. That's absolutely right. So the typical response would be we have to take the red button away from the child. However, the child has a developmental need to mouth things. And child care providers will constantly tell us, you know, you can take the button away and they will find something to put in their mouths. Yes they will. They will hunt down in your house until they find something to put in their mouths. The issue is not revision but substitution. We need to substitute something that's appropriate to put in their mouths because they have a developmental need and developmental right to do that.

The next key concept is the issue of partnership. We have to recognize that achieving prevention requires strategic partnership development and we have to move beyond the obvious partner circles. We're always partnering with Social Service $and health and police and fire. We've got much better at that thanks to CDR but we also need to be looking at community and nonprofit. Just because people don't have a degree doesn't mean they can't be outstanding, outstanding activist partners. We partner for various reasons, information collection and review. We partner for help with interpretation and program planning. We partner for resource identification and mobilization. We partner for implementation. We partner for evaluation. We partner for social and political leverage. We partner for our own political protection, and my colleague in the fire said once that what he likes about CDR is everybody is competent until objectively proved otherwise. I think that's also a key principle for CDR. We also partner for our own growth. We have incredible capacity to learn from our key members. Key concept six, enter the advocacy arena well prepared. Many of us think because we have compelling data and it's the right thing to do that we will survive the advocacy and legislative process. We will be mauled, and I think it's unfair to send the innocent to the arena of advocacy. I always tell my students that logic and data have nothing whatsoever to do with the legislative process. And I think that we need to protect people before we send them down there.

All right. But, on the other hand, researchers, the data types need to be aware that social ethical and cultural economic factors have a powerful influence on policy. So while we can work on bridging the gap between evidence and policy, the researchers are really not the people who should be doing it. We need to be looking at key players within community to help us bridge this gap between the data and the policy.

The other thing I say to my students is I don't care why they do the right thing, I just need them to do the right thing. So we don't need to have them do the right thing because it's for the moral good or public health data reason, I don't care why they do it they just need to get it done. Key concept seven, patience and perseverance, closing the gaps with evidence‑based interventions is going to take time. Good interventions take time. Social change takes time. It's also going to get us to have to move to a different place in terms of the social and political will of communities to change and to prioritize the safety of children. We need to build our experience, start with winnable battles. We need to build and help sustainable change and we can't expect a hole in one with our first intervention attempt.

So in answer to the question, can the dead speak? The answer is quite clearly, yes, they can. And the way that the dead speak to us is through the work of diligent and committed translators. The people that look at the messages that the dead want us to move so we can move forward and protect the living.

What we're asking of you today is to commit to becoming a translator. The investigation of death can protect the living through understanding of these simple events and by the translation of that industry strategic action. In accepting the challenge involves sharing information out of the CFR community and into the broad community and society in general. The prevention community has a vital role to play in the translation of CFR into prevention action. And we would ask you today to get involved in that. Thank you.