LISA SIMPSON: Thank you, Arden. And it’s really a pleasure to be here.
Good morning.
AUDIENCE: Good morning.
LISA SIMPSON: Just checking if you’ve had enough coffee. And when I arrived her I told Arden to say something else, which I’ll mention, now which is I’m also--this is a little bit like coming home because I was MCH Director in Hawaii, for three years, so that was my first real job and I learned a ton from it. And it really shaped some of the decisions I made from a career perspective, that lead to some of the other jobs that Arden mentioned.
So what I’d like to do this morning is first acknowledge that even though I’m the turtle on the fence here talking to you, there are all these other turtles behind the fence that I have to thank them for, you know, helping me get on top of the fence, both through mentorship and collaborative learning, and also just other folks who generate amazing knowledge that I beg, borrow and steal because one the things I learned from Charlie Homer in Quality Improvement, is if you see a good idea, don’t reinvent it, just steal it, use it, and that’s a big part of the translational challenge is getting people to not reinvent things and to just use what already exists because it works.
This morning I’m going to go through the following six areas and the late John Eisenberg, who was the Deputy Directory of the agency for five years, taught me never to have more than three bullets. So this is, you know, counter to what he always said, but I first want to make sure that I make clear what are some assumptions in my brain, as I think about this issue, then talk about why are we focused on translation, what’s the imperative and then use really the basic framework of Rogers Diffusion of Innovations work to think about what promotes or impedes research translation and try to make that more concrete for us as we think about MCH practice.
Speak a little bit about some of the unique issues that I see and would love to hear more about from your perspective in MCH practice and then how do we measure the impact or, as we call it now, the ROI--the return on investment. The Brits call it the payback or the payoff, so you hear lots of different words but internationally everybody’s focusing on this and then some thoughts about maybe going forward with some strategies that we might use. So here are my assumptions.
First, the assumption is that translating research will actually result in more informed and more effective policies and practices, that it’s a good thing to use research to improve children’s health and women’s health.
And also the second assumption is that in policy making I’m actually talking at least at three levels: one the, sort of, public policy making whether that’s at the state or federal level; administrative or systems policy, decisions that you make as program administrators that hospitals or integrated delivery systems make about children’s health care; and then also at the clinical or practice level, where individual physicians, nurses, practitioners are making day-to-day decisions, hopefully with parents and partnership with children and families about the care that they’re going to receive.
The third point is that using research doesn’t always result in impact. And so, you know, at the agency we were always being asked by Congress, "So what have you done for us lately?" Sort of, shorthand but, you know, what difference has your research made? And we were very good at saying who was using our research, but they weren’t satisfied. It was very much, "But what difference is that making for health in America and health care in America ?"
And then the final point is that this issue of translation is not a new problem, and I’ve got two examples for you. This is my favorite and it’s taken from a science article that quoted this that basically in 1601, Lancaster showed that lemon juice supplements actually eliminated scurvy, but it took 194 years after that discovery for the British Navy to implement the citrus juice supplement in their navy. So that’s a very long timeframe.
A more recent example is from the case for prenatal cortical steroids, which you know are recommended to prevent RDS in newborns. The original research by Liggins, in animals, was in 1969, which showed this benefit. And then he did the first human studies in 1972. Well, then over the next 21 years, 17 more trials were done and some systematic reviews were conducted in the late ‘80s, but in the ‘90s studies continued to show under use of the effective technology between 20% and 30% adoption only.
So then the NIH did a consensus conference and guidelines were created and then in 1999 Levitan and her colleagues published a study with Goldenberg and others in Alabama that showed that they were actually able to increase diffusion or use, from 33% to 58% or, at best with active dissemination 68%. And so while that’s a good news story it certainly increased, I think I also focus on it’s still only 68%, even with a very active dissemination strategy that they use with opinion leaders and other tools.
So this is an enduring issue, as we look at translating research into practice. This is one of my favorite slides which maybe you’ve seen before because lots of us at the agency used to use it but Andrew Balis, who’s actually now the dean in Norfolk --he was at another school--Andrew Balis put this together looking at various citations which he includes here. You can see each of the individual citations. Does this thing work? There it is. Dickerson, and *Corrin, Balis, *Poinoir and basically summarizes how long it takes to go from original research through submission to the journal, acceptance, publication, bibliographic databases, reviews and then implementation and concludes that it takes 17 years, on average, to turn 14% of original research to the benefit of patient care.
So we have not only long delays in the translation, but loss of amplification. Only 14% actually end up being implemented. So we have to address both the timeline as well as the amount that gets translated.
And so why do we care about translation now? Well, as I mentioned earlier this is a growing course nationally and internationally. And, in fact, the World Health Report in 2004 focused on health systems and how effective they were and focused very much on translation as one of the issues. The Evidence Based Medicine Movement, which you’ve maybe heard of, has, itself, generated a call for evidence-based practice and policy. If you’re going to ask clinicians to do evidence-based care at the bedside or in the clinic, well, are we using evidence in deciding how to structure those clinics, how to pay for the care, how to, you know, what to reimburse, what programs to build and so that there’s this growing movement towards that as I think Steve has alluded to.
Another big force which I’m sure you’re all feeling is *GIPRA. It’s certainly hit us with a sledgehammer at AHRQ when I was there and I’ll touch on that some more. And then I think the two I want to spend a bit more time on, is first, the growing recognition of the scope and severity of the quality challenges in American health care. That despite all this money we spend on health care, people are killed by health care, people do not receive effective services and many people do not--have disparities in health care quality, and then the doubling of the NIH budget.
So what do I mean about quality of health care? I would commend to you these slides and this chart book. I’ll mention it later in my talk, but a fabulous pulling together last year of the evidence on quality for children. And this is one example where it’s a study by the Commonwealth Fund that reported that less than half of all parents of young children reported that they had ever discussed five of six age appropriate child rearing topics with a health professional. And I know you’re hearing from Mike Barth and others about the Healthy Steps programs, so clearly a need for improvement in developmental services.
Another example that I’m sure you’re familiar with, is the issue of preventive medication for long term asthma control and here, again, I’ll focus your attention on the privately insured children age 10 to 17. Even though we’re seeing an upward trend in each of the populations over three years here even, you know, over here I guess privately insured young kids still only 70% are getting the medication and these are the kids who should be getting the medication who have persistent asthma. And then when you turn to populations we know are underserved. Look at this, racial and ethnic differences in asthma management among white, black and Latino children. The use of daily anti-inflammatory mediations, again, among children who need those on a daily basis, is way down here, so huge disparities and huge needs for improvement.
And then the final example which I’m going to come back to later again is Attention Deficit-Hyperactivity Disorder and, again, here you see not only racial and ethnic differences and gender differences, but in each of them a huge drop off between parent perceived behavior problems, whether they get evaluated for ADHD and even then whether once evaluated whether they are actually diagnosed or treated, so clearly some opportunities for improvement in quality.
The second big imperative for translation comes from the doubling of the NIH budget. Now, I would ask how many of you actually now how big the NIH budget is these days because it’s pretty daunting. Any numbers out there?
Well, when I joined HHS in 1993, it was $11 billion. It’s now close to $28 billion. So it was a doubling over five years, but it was growing before that. Just imagine $28 billion of NIH research.
Now, you know, when I hang out with the NIH researchers they’re all bemoaning that, you know, it’s flat funding, nobody has any money but from the outside, you know, when you look at some MCH programs funding it’s quite impressive and this analyses by Gitterman et al, was published in Health Affairs last year and it was a special theme issue in Health Affairs on child health and I had the honor to serve as the issue advisor. So it’s a good compilation of a lot of related issues for children and policy.
But Dan Gitterman and his colleagues documented the overall doubling and the good news is pediatric spending did keep relative pace with the rest of the budget, 12.3% versus 11.3% and interestingly only two thirds of the child health research at NIH comes out of NICHD, the National Institutes of Child Health and Human Development. One third is in all these other centers and, in fact, the center that had the largest growth in research for children was the National Institute of Mental Health. So a lot of focus on behavioral health issues in children.
So Rich and colleagues have summarized that in the past--20 years ago and before that--we had a sense of the social contract that there was public funding to institutions and universities in exchange for just good quality research. That was the only barometer of whether the money was worth spending on research.
Now that social contract has changed. You get money for research but then you are asked to account for the outcomes of that research. What is the return on the investment? What is the utility? Who is using it and what difference does it make?
And more so in the clinical setting, in 2003, it was interesting to see that the clinical research roundtable then summarized these two translational blocks. The first one here is between basic research to basic sciences and human studies, and you might have heard about the roadmap and translational research and all that. Well, unfortunately, that’s where they’re focusing, translation from animals and labs to people. This is what we want, translation from people and studies to practice. And there’s much less investment in that kind of translation.
So turning from the need to translate to what do we know about how to translate let me--oops. The fancy things, somebody put that in there and I always hate that. Here is Rogers Diffusion S-curve, which basically shows that with any new knowledge or innovation you have the innovators who are the first to look at it, to hear about it and to do it, and then you have early adopters. And then over time the early majority comes in, the late majority and finally the laggers and what characterizes those different groups?
Well, innovators make up about only 2.5% of folks who adopt information, use new information, new knowledge. And they have certain characteristics. They're high tolerance for uncertainty. They’re willing to jump in and try stuff out. Early adopters tend to be very well respected opinion leaders and this is a critical point because the role of opinion leaders in translation is very important change agents. They’re well integrated into their network and social system and they can demonstrate that they’ve used the information and that it works and so it helps people observe that and say, “Oh, okay. Well, they did that. Maybe I can do it.”
The early majority is also very interconnected and this is the largest group here as well as the late majority. They tend to be skeptical but they respond to economic necessity and social norms. So by the time all these have adopted the social norm is now for adoption, so they’re going to go and adopt the new information, the new practice, the new behavior. And then down here you have what they call the laggers and these terms are not my choice. They’re somewhat pejorative, so I apologize. But here these are folks who are much traditional or relatively isolated and in a precarious economic situation or suspicious.
And this is relevant for this example and this is Paul Wise’s adaptation of Rogers curve, where he has been doing terrific work looking at the intersection between new information, new clinically efficacious technologies and disparity creation. Because as things diffuse into practice we know that certain populations of children are less likely to get that treatment, that new knowledge as quickly.
So, again, this is one those--let me get all the lines up here--so for example, you know, here in the HIV realm in the adults population they found that with population A and then population B actually women took a highly--HAART--you know, the drug cocktail--highly effective antiviral blah, blah, blah, blah, blah--I always forget the HAART. But there was a lag in adoption but eventually it came back up to the same rate as white men.
But here, if you look here, you actually--this is more of a diffusion curve for the issues around back to sleep and SIDS mortality where it’s diffused in the white population very effectively and the mortality rate from SIDS has gone down to 55.9 but within African/American communities the mortality rate is still 110. And so there is a lack of adoption in different communities that we have to be aware of as we think about our diffusion and translation strategy.
So then as we think about the dynamics of innovation diffusion there’s both--what’s the new knowledge you’re working with? What’s the communication channel and where’s the social context and this is what he defines. And I’m going to try to run through these pretty quickly.
First, does the innovation of the new knowledge provide relative advantage? And it’s got to the extent that’s it’s controversial, that will slow down the adoption. So does this actually help your program? You know, when you work with your delivery system, will this knowledge actually help you? Does it provide a relative advantage?
And one of the ways to then promote the translation is you’ve got to understand who you’re working with. Who’s the end user who you want to do that practice and you have to recognize the impact that change will have and is there a business case to be made? Can you argue for it based on economics the way Steve did about these prenatal care interventions. And very important is make it real for folks. Give case stories. Put a face on the new knowledge. If we do this for pregnant moms we will have fewer dead babies. Sometimes it’s hard to say that, but you have to make it concrete and show stories of success.
The next issue is trialability and that is can you actually test it out? One of the reasons health information technology is not diffused very quickly into practice and systems is that it’s, kind of, an all or nothing decision. Am I going to buy an electronic health record or not. It’s huge. You can’t, kind of, test it out. So it’s really important to try to focus on small tests of change and this is a core concept in quality improvement that’s used, while it comes from the clinical world, we’re doing it in foster care, we’re doing it in medical home. We’re doing it in all kinds of environments that are much more public health oriented now to adapt a small test of change and try it one place and then diffuse it to others.
The third area’s observability. Can you actually see other people doing this so it’s not hidden, so you can demonstrate and you can watch somebody do the new program, use the new knowledge and, sort of, observe does that make a difference, do you like the outcome? And so it’s really important to do things like this, bring groups together to share the experiences. Collaborative learning helps people, sort of, see what others are doing. And then use the charismatic opinion leader to demonstrate the success and the term I love is Viral Marketing. Sort of, you know, infect people with the new knowledge. Drug companies do this very well in that they put their name on pens and all kinds of things, so other people go, “Oh, they’re using that drug.” You know, “Oh, that drug’s being used by that person.” Well, how can we use that in public health? How can we use that in MCH practice? So you’re spreading good practices.
The final dimension of the innovation is whether it’s compatible with your values, past experiences and needs, and it addresses an issue that everybody agrees is a problem. And I would ask, “Is this one of the issues with the lack of diffusion of the back to sleep in the African American community?” Is there a lack of compatibility with long held values and traditions? I don’t know, but I would ask that question. And so it’s important to look for current behaviors and practices that are similar. So you can make people see, “Look, you’re doing this already. Just move over to here a little bit. It’s not so different.” Make things feel familiar for folks, and then they can use the information.
And obviously innovations that reduce hassles are much more likely to be successful. If your new knowledge makes somebody work more, you’re going to have a bigger barrier to get that knowledge used.
The second area is the communication challenge, the channels, and Arden just did a great example with the list serves, which I forgot to mention here but it’s really Internet based and these Web based affinity groups whether it’s NICHQ collaborative's or these list serves that condense information for you. It’s really wonderful. Direct to consumer information and we shouldn’t forget about our patients, our customers, the folks who come to our programs. They can help change the providers practice. It can be very powerful to engage families, to demand the kinds of services we want to make sure they receive.
And so some of the key lessons here is the more complex your message is, the more important it is to be face-to-face that people can talk about it, discuss it, what does this new knowledge really mean? How would I use it in practice? And then to match the channel to the audience and the innovation and this important role of connectors or information brokers. If you’ve read Malcolm Gladwell’s “The Tipping Point,” he talks about connecters and I’ll come back to the role of information brokers because I think they’re critical to MCH practice.
The final area is the social context. And in health care it’s certainly, you know, I learned to do it this way so I’m going to keep doing it this way. Where ever we learned to do it we’re going to keep doing that practice. It’s hard to change that. In quality of care, some have challenged the health care field to say there’s a code of silence among physicians and providers to not acknowledge just how bad quality of care is for children and others in this country. And so it’s really--we’re up against some tough challenges and that’s where leadership, a commitment to excellence and an organizational culture of creativity’s essential. You’ve got to promote risk taking because trying new knowledge, translating new knowledge is a bit of risk taking. It means changing what you’ve been doing everyday to something new and better.
So taking from those general lessons about how does information and knowledge and innovation diffuse into use, I’m going to give some comments specifically for the policy environment.
And then the clinical environment and the police environment obviously shapes where MCH practice is. We’ve got to be able to interact with our policy makers to get them to fund the programs that work like Steve talked about, to not cut the programs that we feel are essential. And here are some issues that Davis and others have identified that are very critical to whether or not policy makers are actually going to listen to your research. Is it practical? Is it ideologically acceptable? Obviously, the last example was not--that Steve used--was not ideologically acceptable. What’s acceptable is, you know, abstinence education, so there is definitely that issue.
How complicated it is? That contributes. If you’re trying to sell a program that you can’t talk about on an elevator ride with a policy maker you’re going to have a hard time, you know, it’s the cafeteria line test. Can you tell somebody in the cafeteria line what you do and why it’s important? If you can’t say it that quickly and that articulately, it’s going to be hard to persuade them.
And then obviously the method of transition and I talked a little bit about that and I thought this was an interesting--I’m going to just give you two examples of systematic reviews. This one is on policy makers where they summarize 24 studies that together summarized over 2,000 policy maker interviews and this is what policy makers thought were the facilitators of them using research. Look at the predominance of personal contact because it’s very important for you--for all of us as MCH advocates--to get out of our, sort of, comfort zone and go talk to people who are going to make decisions about what gets funded and what gets used. Personal contact is critical.
Obviously timeliness and relevance is also important but also the synthetic summary and recommendations are included, so the kind of work that Arden ’s doing, in terms of summarizing literature, making it more easily accessible, make things concrete for folks to translate that knowledge.
What were the barriers? Well, the opposite, lack of personal contact. Just getting information, sort of, you know, written does not help policy makers and then I thought this was interesting the mutual mistrust and reciprocal naivety. The policy makers think the researchers don’t get it. The researchers think the policy makers don’t get it. And so here’s some examples. These are some statements that over the years AHRQ collected that policy makers made on researchers. They take forever to answer even the simplest question and then they’re late with the results. What is this stuff they write? Who can understand it? They work in their ivory towers and produce impractical or irrelevant ideas and recommendations and they’re always hedging. I can’t get straight answers. And so that’s why the focus of this conference looking at making change happen and trying to over come this, sort of, perception of ivory tower versus real world is really critical.
The counter factual is researchers on policy makers. They don’t the equations I can actually study and they won’t accept uncertainty, you know, I always have odds, ratios and confidence intervals, but, you know, they just want to run with stuff. And they want an unrealistic turn around time for results and they can’t be trusted with my results. They may misinterpret and misuse my results and we’ve heard that a lot from researchers because we push them to get engaged, get your research used and they go, “Well, they might misuse it. They might use part of my findings and not all of my findings and that’s an issue.” And certainly it’s an issue when it comes up to major diffusion of programs and the dilution of effect.
Some home visiting programs, you know, work for A, B, C or D. Well, but let’s do it and not fund as many. Let’s do the case work ratio is going to be higher than the studies showed and, you know, what gets implemented is a program that looks nothing like the original research that showed it was effective. And then policy makers are dumbfounded when it doesn’t work and they don’t get the benefits and the savings that they thought they were buying, so that’s a huge issue.
So looking from those issues to the directions the important implication is that we’ve got to have an ongoing interaction between the two processes. And here’s some information brokers to think about it because they are going to be key in this translation step. So obviously from my background, AHRQ is a key information broker. The bureau can also help develop information and broker it between organizations. The foundations are taking more and more of an active role here. The commonwealth fund if you’re not part of their list serve, they have wonderful summaries of research and findings. Other foundations are doing this too. And then obviously research and policy centers and my favorite model is the EIS service--the Epidemics and Intelligence Service which I really think we need to, sort of, again infect all kinds of other programs with that model of training people, sending them out onsite but developing a program that really helps to broker that translation.
It’s the Agricultural Extension Service and then obviously our constituent organizations can play that role and it’s important to remember that change agents are, sort of, a step beyond the information broker. A broker just, sort of, provides neutral information. Here’s the evidence, you know, use it, hopefully, maybe I can present it nicely. A change agent is somebody who is actually advocating a particular piece of evidence saying, “Use this.” They’re a leader out there and as the definition from Rogers shows they influence clients decisions in a direction deemed desirable.
And I couldn’t resist including this, sort of, point of information. Academic detailing is when pharmaceutical companies send drug reps out to doctors to get them to use their drugs. Do you know that there are almost 60,000 of them in this country? That’s one drug rep for 14 doctors almost. Well, no wonder they’re so effective at changing doctor’s behaviors and using new knowledge, maybe not always for the best. But this is a translational, sort of, broker and change agent that’s very powerful.
In terms of clinical translation, there have been multiple reviews in the last 10 years to look at what actually works to change practices in various settings. And up until recently the prevailing wisdom was you needed a multifaceted intervention to get people to change behaviors. Well, that’s, kind of, tough for organizations to mount, it’s expensive. And that passive dissemination such as this conference--CME--was ineffective at changing behavior.
A more recent review that just came out last year that looked at over 200 studies--the bad news is mean absolute improvement was only about 10% and there was a wide variation in effect-side, but the good news is that multifaceted interventions were not significantly more effective. So that’s the good news. It makes it easier for organizations to just try one thing. Again, remember that, sort of, trialability, let me try this use of the knowledge and then test it again. And that passive disseminations produce modest but consistently positive improvements, so I think there’s some good news/bad news in this recent outline.
So then turning to the unique issues in MCH practice, just to, sort of, make it concrete at least at these three levels of decision making, you know, children, teens, families and practitioners are obviously involved in that one-on-one decision about they’re going to do, whether they’re going to get, you know, ADHD care, et cetera. Health care systems, this is, sort of, where I throw in MCH programs because it’s health plans, hospitals, local health departments, community health centers.
We make decisions about what services will be provided, you know, at what time, in what setting, if we have car-sharing sharing for how much, et cetera, and then public policy decision makers. And here’s just a quick example, so the public policy is do we reimburse for ADHD related assessments which are often, if done well, very complicated and the systems policy is how do we promote better identification and management through collaboratives, through partnership, through working with the schools, working with public health and the clinical policy is which children should be managed with which strategies.
So some of the unique barriers in MCH practice are first the dominance of the private sector and market-based approaches where knowledge is power. Knowledge is a market advantage, which means people don’t want to share knowledge as much. And so, you know, I think that’s less of an issue in MCH practice but when you work with systems and you partner with managed care organizations and all that there are some issues there in terms of market advantage.
Also in this country there’s a big skepticism as to the role of government and we, kind of, have to live within that and a prevailing view of children as the responsibility of parents. So Americans do not want a whole lot of government activism to improve children’s health. This is from public surveys of the public. And we also have, as you know, very fragmented systems of care and a heavy reliance on state action for children. What does that mean? Well, in Medicare--you have one Medicare program. You find some things effective, like, beta-blockers for heart attack, well, Medicare reimburses it and they do a QI program nationally to get all the doctors to do it. Rates go up.
What do you have in this country? Fifty Medicaid programs, 50 Title V programs, 35 stand-alone S-chip programs. The same effective piece of knowledge--that little bit of information about what works for kids--you then have to get to this diffuse group. So the role of information brokers is even more important and also you’re not just talking about doctors. In children’s health care we’re everywhere. We’re providers of every stripe. Nurses, doctors, early intervention specialists, all kinds of practitioners and we work in multiple settings, so it just makes that translation and diffusion even more difficult.
And then in addition, child health providers are some of the poorest, relative to other providers in this country. They’re under resource. Family practitioners and pediatricians are the lowest paid and they’re under capitalized. What does that mean? Well, they don’t have as much capital to invest in things that we know will support translation of new knowledge like a quality improvement collaborative, you know, going to educational sessions or buying information technology that will remind them to give immunizations on a regular basis, you know, which is a decision support system. They can’t afford to do these things as much as adult doctors can, so that’s another barrier that we see in children’s health. And there’s an under investment in this infrastructure that I just mentioned and then just demonstrating to benefit is more difficult.
So here’s the definition of what’s a return on investment? Well, it’s when the investing entity realizes a financial return on the investment in a reasonable timeframe and using a reasonable discount rate. So when you think about that in terms of children, first of all, consumers can’t see the quality difference, you know, in cares and quality information is less available in children’s health.
There’s also the displacement in time and sector. The example that Steve gave us about prenatal care and infant mortality is a good one because that’s one of the few examples where we have a quick pay off. Nine months later you know whether it worked or not. Children’s health, you’re talking about waiting 10 years, 15 years before you know if it worked.
For asthma you’ll know more quickly because we know hospitalizations, ED visits go down if the kids have a good self-management community based program. But there, even in asthma, the provider or the local health department that does a, sort of, asthma case management program they don’t get the benefit back of those kids being in school more often.
The schools get the financial, sort of, payback because they get paid on a presenteeism basis. So not only do you have displacement in time but also in sector. Or the employers get the benefit because the parents aren’t staying home with those kids, you know, they’re not taking sick days. They get to stay in the workforce. The MCH program or the provider doesn’t get the benefit of investing. And there’s no, you know, the financing of asthma care is higher for hospital services. So hospitals don’t want to invest in asthma prevention because they lose money every time they do because they make money every time a kid gets admitted and the longer the kids stays the more money make. So children’s health definitely has some unique issues.
And then finally, the last one here is that the evidence base--where’s my little pointer? There it is. We have less research and evidence available to translate into practice and policy. It’s just not as robust and that comes from a longstanding under-investment.
So turning from that how do we measure the impact or the return on investment from the knowledge that we do have? And I always like to start with a quote from our president: “Government likes to begin things, to declare brand new programs and causes and national objectives, but good beginnings are not the measure of success. Government should be results-oriented guided not by process but by performance. There comes a time when every program must be judged as either a success or a failure.”
And this, as you can see, was in 2000 and it was very much shaping what we were doing at AHRQ and some of these questions might look familiar to you because they’re taken from the *GIPRA evaluations that MCH programs have to send in and all the federal programs. And I have to say that when I was at the agency and this was implemented, my last year--there up till then I’d only seen these kinds of questions being used to cut programs. “Oh, you didn’t do well enough. Oh, we’re going to cut your funding,” et cetera. My last year there, two of the agency’s programs did very well on the evaluation and we were given $1million more than we asked for in one of those programs because they, sort of, you know, they were true to their word in both ways. Less money if we don’t believe you, more money if we think you’re right. So that’s, kind of, interesting.
And then as we think about, well, what impact are we talking about? Well, research can improve other research, contribute to more knowledge and hopefully, generate more research. It can improve the processes and policies that you use as MCH programs or that Medicaid uses like, you know, outreach and enrollment.
A lot more research has happened there about passive reenrollment so kids don’t get dropped off Medicaid. That’s showing that that really increases kids staying on Medicaid and not losing their insurance so, you know, improving processes and polices in state programs can improve health for children. And then the next level is whether it changes delivery of practice and then ultimately improving access outcomes and quality.
So to give you an example here from ADHD, level on was what’s the impact on the knowledge base? Well, the Agency for Health Care, Research and Quality produced an evidence report on the management of ADHD. Level two was that then the American Academy of Pediatrics developed guidelines based on that research. And then level three, NICHQ and the American Academy of Pediatrics at the time partnered to develop a collaborative program to improve care now in 13 states. And you’ll see level four, I’ve got TBD because the words not in yet. That’s still ongoing.
Florida ’s one of the last states to join that collaborative and the evaluation will be happening at the end of this year. So that’s just one example of thinking through the four levels of impact, so you can communicate to program managers what kinds of impacts you want to know about.
Here are some other examples of impact. Again, I know you’re hearing about the Healthy Steps Program, so we here have both impact on clinical polices in terms that the child had a developmental assessment, but then the child was actually up to date on immunizations at 24 months which I claim is really an outcome because that’s very closely linked to reduced disease.
The other example here from the chart book, again, is about a state Medicaid program increasing lead screening from 21% to 80%. And then the final example is, again, improving asthma care in an inner city hospital specialty clinic where you see that the control and intervention groups before the intervention and after the intervention, you see some more significant reductions in the intervention group in some of these outcomes as well as very dramatic increases in the process or level three of care.
And then this is a final example from, again, the collaboratives at NICHQ where both process as well--I guess, no, these are all process measures of whether or not they had the right medications in an asthma management plan.
So given those ways that we can measure impact, I now want to end by thinking about some strategies for maternal and child health practice to promote the translation of research into practice. And four things, I think, are needed. I’m going to talk a little bit about these four things and then adapt a framework about maybe a whole system for translation for MCH.
The first area is the synthesis and it’s critical to take the overload of information that we all suffer from, in terms of research coming out and synthesizing that into actionable pieces. These are, like, toolkits that have been developed for program managers and providers in the community, as well as what we call in the quality world Change Packages which take abstract concepts and actually then translate them with measures and toolkits and say, “Okay, here’s the little test of change, you can try doing this.”
For example in the area of cultural competence we’re working on that because there’s been a lot of theoretical work on what is cultural competence in a lot of research, but how do you take all that knowledge about cultural competence and then actually change, you know, a setting where you’re delivering care to individuals.
And then there’s training, collaborative learning and system wide partnerships and I just want to touch on some of the ones that NICHQ does. Here is an example of a training, this is--oops--let me go back up--the Jumpstart, up here is a training that we do for leaders in quality and it’s our second year doing that. It was very successful last year.
Here is moving from doing collaboratives at the clinician level and, you know, some of them have been in foster care, again, as I’ve said in Head Start programs, et cetera, to improve services and now focusing on building regional collaborations that, sort of, disseminate this collaboration statewide. And there’s currently a call from NICHQ and the Vermont Child Health Improvement Program to recruit states. They’re going to be able to work with five states to do regional improvement collaborations around early development and developmental services for children.
This is the one I mentioned--the cultural competency where we’re just developing change packages for people to be able to use to build cultural competency into their programs. This was our annual forum last year. We’re doing our next one in Orlando next spring and then this is an example of another way of promoting the translation.
These are distance-learning collaboratives. You don’t actually have to go to a meeting and sit in a room and do the face to face that I talked about which was so important. Here’s a newer model where it’s ongoing collaboratives but over the phone with computer assistance and these Web based collaboratives this has been very popular.
We’ve got 70 hospitals working on normal newborn care because there have been networks for, you know, NICU babies for a long time but this is, you know, the majority of kids are in community hospital, not children’s hospitals and this is focusing on those settings to try to improve early newborn care so that the kids is discharged appropriately at the appropriate time and all the issues around hyper mobility et cetera.
And so then to end I just want to propose the building blocks for a translation system in maternal and child health and I’ve adapted this from work that Jessie Gruman at the Center for the Advancement of Health has done where he calls for four distinct components. First is, consensus methods of doing research and really calls for more mission-driven research. We have a real conflict in this country with the $28 billion of NIH funded research.
The tension between targeted directed research that really is focused on the priority issue for children and families and adults in this country versus investigator initiated-research where bright science and good ideas and you’ve got to have both of those. But if we’re really going to change health we’ve got to focus much more on priority setting in our research.
We’ve also go to fund the translation strategies. You’ve got to do research on how to do translation, not just take it. We’ve got to learn more about how to work with behavior change, what models are effective, et cetera. And then this knowledge mapping or synthesis that I’ve alluded to several times, it’s very important to have these intermediaries who can pull together relevant information in a format that’s accessible to program managers so they can actually use it and adopt it.
Then we need an information infrastructure and I’ve listed some Web sites here. If you aren’t already familiar with them they’re really terrific. The Child and Adolescent Health Measure initiative and Family Voices run a data resource center with support from the Maternal and Child Health Bureau. And they both online already the Children’s Special Health Care Needs Data and coming soon is the National Survey on Children’s Health. And what’s terrific about this Web site is you can do customized reports for yourself in your state. You can, you know, format it different ways and so it’s very user friendly.
The AHRQ Child Health Toolbox is another great source of information about performance measurement, quality measures, related issued. And a newer Web site that’s going to be going up soon, it’s actually not open yet. It’s just going through final review--is from the Adolescent and Child Targets for Health Foundation which uses Healthy People 2010 to put together the evidence about what works for each of the objectives. So far on the Web site is just asthma and injury prevention but pulls together, again, all the information and the other Web sites and links and content so you know what works for asthma and what are the resources out there.
The final two aspects of the translation system is the ongoing communication between researchers that we need so that we cross-fertilize and not reinvent the wheel. Two things that we do are this annual Child Health Services Research meeting, and then obviously the Pediatric Research meeting. And then the final--actually I think there’s one, yeah, sorry--the final in this category is that we need accurate and current information for the public. Part of translation is somebody’s got to ask for better health care for children. If nobody’s asking for better health care for moms and kids there’s no driver or demand for it, so we have to do a better job of informing the public at the local, state and national level of what the needs of women and children are. And here are two examples: the Commonwealth Fund Chart Book, and then the ones I alluded to earlier from the CAMI.
And again, the final two components that Jessie talks about are the drivers of a translation system, the demands for improvement, the need to create incentives, and that’s, you know, if you’re using good new knowledge, shouldn’t you be incentivised to do that? Shouldn’t you be rewarded? Won’t that help the adoption and speed? And in the health care setting people are talking more and more about pay for performance, where if you do better in your health care setting, provide more immunizations, deliver better quality, more mammography you get a bonus or additional payments. It’s still somewhat problematic, but it’s certainly a direction that the system is going in.
And then finally system guidance and accountability, and it’s really important to coordinate across agencies at every level, whether it’s federal, state or local. Again, because we have to be efficient in the way we use information Medicaid is a key player obviously. And in fact, Medicaid can serve as an information broker. In some states Medicaid has been very proactive in moving to push individuals. I would like to see the national CMS Medicaid Shop be as effective as the national Medicare Shop in trying to push improvement for their population. It just doesn’t happen nationally. There’s no focus on improvement within the Medicaid program at the national level.
And then obviously broadly recognized leadership and finally I think some accountability. One of the things that I think I mentioned in my article last year in Health Affairs on this issue, is that we’ve increased all this money for NIH, well, where’s the accountability? Where’s the report on what research is being done for children and what difference it’s making? If that were a accountability requirement from Congress, I think, you know, having been in the federal sector that then pushes you to focus more on, well, what difference is it making and how are we pushing this out into practice? So I think we need to do that better as a country.
And my final idea on this slide is that I really would love to see an EIS for children. What I call a Child Health Improvement Core. That we could train a cadre of experts in how to be an information broker, what are the issues for children, how do you translate effectively, how do you improve care, and deploy that core out to the states to work with systems and providers to really try to shorten that gap. It’s worked in the Agricultural Extension Service. It works at CDC. Why can’t we have that at MCH? And not just the MCH EPI program, that’s good but it’s not big enough.
So to end this is a slide that I adapted from John Eisenberg. In his office, had this framed picture of this glass half-empty--half-full and that’s how he saw life. It was always half-full for him even though his life was cut short but as I am optimist in children’s health, this is what I see.
Thank you.