the carter centre vision .pdf

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The PresidentsNew Freedom Commission on

Mental Health:Transforming the Vision

The Nineteenth Annual Rosalynn CarterSymposium on Mental Health Policy

November 5 and 6, 2003


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The Pr esident sNew Fr eedom Commission on

Ment a l Heal t h :Tr ansfor ming t he Vision

The Nineteenth Annual Rosalynn CarterSymposium on Mental Health Policy

November 5 and 6, 2003


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Table of Cont ent s

Opening Remarks

Rosalynn Carter, Chair, The Carter Center M ental H ealth Task Force........................................................................1Thomas Bryant, M.D., J.D. ........................................................................................................................................2

Keynote Address

Michael Hogan, Ph.D.,Chair, Presidents New Freedom Commission on Mental Health............................................3Questions & Answers ................................................................................................................................................6

Panel 1: Implications of Mental Health Science for Society

Rodolfo Arredondo Jr., Ed. D., Moderator ................................................................................................................7Thomas R. Insel, M.D.,Research for Recovery: The N IMH Perspective....................................................................7David Satcher, M.D., Ph.D., The Connection Between Mental Health and General H ealth......................................10Ronald Kessler, Ph.D., The Importance of New Epidemiological Findings for Policy..................................................12Questions & Answers ..............................................................................................................................................14

Dinner AddressCharles Curie, M.A., A.C.S.W., Achieving the Mental H ealth System Transformation Together:

SAMHSAs Action Agenda and Partnerships..........................................................................................................16

Panel 2: Moving Science to Services

Larke N. Huang, Ph.D., Moderator..........................................................................................................................20Benjamin Druss, M.D., M.P.H., Evidence and Transformation..................................................................................21Barbara J. Burns, Ph.D., Readiness for Evidence-based Practice in Child and Adolescent Mental Health....................24Larry Fricks,Recovery-based Innovation....................................................................................................................26Questions & Answers ..............................................................................................................................................28

Panel 3: Strategic ImplementationNorwood W. Knight-Richardson, M.D., M.B.A., Moderator..................................................................................29Glenn Stanton, Financing Mental Health Services in the Future................................................................................30A. Kathryn Power, M.Ed., Implications for Implementing the Final Report s

Recommendations for Systems Transformation........................................................................................................34Mark L. Rosenberg, M.D., M.P.P., and Margaret McIntyre, M.B.A., Building Coalitions

for Better Outcomes in M ental H ealth....................................................................................................................38Questions & Answers ..............................................................................................................................................42

Charge to the Work Groups......................................................................................................................................43

Postscript

Thomas Bornemann, Ed.D., and Lei Ellingson, M.P.P.............................................................................................43

Closing Remarks

Rosalynn Carter........................................................................................................................................................51

Biographies..................................................................................................................................................................52

Planning Committee....................................................................................................................................................56

Participants List ........................................................................................................................................................57

Task Force Members ..................................................................................................................................................65

Funders........................................................................................................................................................................66

The Presidents New Freedom Commission on Mental Health: Transforming the Vision


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We all were thrilled when the president announced the New Freedom Commission on

Mental Health. The commission was assigned a huge task: to study the whole publicmental health system and report back to the president with recommendations. From my

experiences with the Carter commission on mental health, I well understand the hours and hours of

listening and discussion about what needed to be included in the report. It is not easy. I want the

members of the commission to know that all of us in the mental health field are grateful to you.

Reading the final report brought back a lot of memories of our commission. What struck me most

were the similarities in issues. We know so much more today, and yet the problems are still very much

the same, with one exception: recovery. Twenty-five years ago, we did not dream that people might

someday be able actually to recover from mental illnesses. Today it is a very real possibility. With

our new knowledge of the brain and the advances in treatment quality, we can now shift our focus

to recovery. For one who has worked on mental health issues as long as I have, this is a miraculous

development and an answer to my prayers.

The commission has done its work. It is now up to us, the mental health community, to mobilize to

implement the recommendations of the report. It is an enormous responsibility that is going to take

all of us advocates, professionals, researchers, consumers, and family members working together.

No single sector can do it alone.

There could not be a better time for us to come together, with so much that needs to be done

and so much new knowledge. The mental health system is still in trouble in states and communities

throughout our country. It is sad that all this new knowledge and these new recommendations come

at a time when resources are scarce and mental health programs are being cut. I am concerned aboutbeing able to keep what we have now. We are at risk of losing the gains that we have made for people

we care about and for whom we want better lives.

In the next two days, we have the opportunity to determine where we want to go from here and

how we can best leverage and implement the recommendations of the presidents commission. No

doubt we will disagree on some of the details, but if we can go away from the symposium united and

with a new sense of mission, I believe we can develop a more effective, efficient, just, and equitable

system of care for people with mental illnesses.

Opening Remar ksRosalynn Car ter

Chair, The Carter Center Mental Health Task Force

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Opening Remarks


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Keynote Address

Opening Remar ksCar t er Administ r at ion Pr esident s Commission on Ment a l Heal t hT homas E. Bryant, M .D ., J.D .

Non-Profit Management Associates, Inc.

Acouple of observations occurred to me about the difference between the two commissions.First, we did not foresee the impact of Medicaid on mental health care. The vast majorityof people who are supported by the public system are done so by Medicaid, and the vast

majority of people with mental illnesses are in the public system.

Next, the field now knows a lot more in the way of biological science about how the brain worksand how to treat certain mental illnesses. I think it is a fair statement today to say that while wehave not cured mental illnesses, recovery is now possible. The word recovery was not even in ourvernacular back then. There are now drugs and services like supported work and education that allow

people to function better and in a more normal environment. That boilsdown to the fact that people with mental illnesses are not just stuck in

entry-level jobs mopping the floor but can go back to school and can geta degree or even an advanced degree. All of that has changed since wegrappled with some of the same problems, and that is a watershed change.

One thing that remains absolutely true is that there still is not enoughfunding. Providing quality mental health services costs money. The commission came up with somegenius recommendations about ways to spend money differently, more effectively, and efficiently.However, we still need more funding for mental health care in this country.

I th ink it is a fair statement today

to say that whil e we have notcured mental il lness, recovery

is now possible.


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My remarks will attempt to give you asummary of our experience on thecommission, as well as our thinking

and recommendations about the changesneeded in mental health care at this time.

In considering our work, one has to start witha basic question: Why did this president createthis commission at this time? President Bushannounced the commission, accompaniedby Senator Pete Dominici, in a speech inAlbuquerque at the end of April 2002. However,our clearest view of the presidents intentionscame in an informal gathering that same day.Before his prepared speech, the president metwith about a dozen local people (providers,family members, and commission leaders) for aconversation about mental health and mentalillness. This was an informal, unscripted conver-sation about problems and potential in mentalhealth. The president led the conversation.

As the president was wrapping up the meeting,he said that the message he got growing upabout these issues was to suck it up if you have

personal problems. He went on to tell the storyof a close personal friend who had developeda terrible clinical depression in mid-life. Thisfriend got the treatment he needed and hada wonderful recovery. The president said thatwhile watching his friend, it became clearthis is a medical illness, and it is not right forus to treat some illnesses one way and otherillnesses another. As it is with so many of ourelected officials, I concluded it was a personalexperience that led the president to hisunderstanding of the poor way that we

traditionally treat mental illnesses.

When the commission came together, we hadto grapple with and try to understand what wewere. We understood that opportunities like thisare very rare. It had been a quarter of a centurysince the Carter commission. This led us toconclude that one important thing to do was notblow it. This meant that we had to comply withall of the rules and requirements; to be open andaccessible, taking time to listen to people; and to

collaborate with the advocates in the mentalhealth community. We also were mindful of howcommissions make recommendations and donot implement them. This is one reason whythis opportunity for conversation and actionprovided by The Carter Center is so critical.

We determined that it was necessary to bemindful of our master. In other words, wehad a responsibility to write a report that wouldbe acceptable to the administration, therebyincreasing the likelihood of good follow-through.We also were mindful of the Carter commissions

experience: Leaving behind a menu of opportu-nities that advocates could subsequently returnto and leverage might be as important in thelong run as actions by the current administration.

We were struck by how dramatically thingshave changed in mental health services sincethe time of the Carter commission. The federalrole was very limited back then. The statutesunderlying mental health care were evolvingrapidly, whether in terms of the commitmentlaws, or the laws structuring state systems of care,

or legislation setting standards for mental healthcoverage in health plans. Research was in itsinfancy; the first surgeon generals report onmental health was two decades away.

The major problems in mental health care, andsocietys view of these problems, also have shifteddramatically. If you had asked people 25 years agoto name the biggest thing wrong with mentalhealth care, they would probably have saidthose terrible state institutions. That is notthe problem anymore. Indeed, by and large, theproblems with mental illnesses people would citetoday are problems in the prisons. If we lookdeeper, we see mental illness is a major challengein juvenile justice, in child welfare, in schools,on the streets, and in both public and privatedisability programs. It is not just that the mainproblems in mental health care moved fromhospitals to communities. These days, the biggestproblems are outside the public mental healthsystem. This creates much more complicatedchallenges for advocacy and for improving care.

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Keynot e Addr essM ichael H ogan, Ph.D .

Presidents New Freedom Commission on Mental Health

Ohio Department of Mental Health

Keynote Address


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In our interim report, as directed by thepresident, we focused on barriers to care. Thefirst barrier we identified was that neither mentalhealth nor suicide prevention was yet a nationalpriority. The surgeon general had advancedawareness of suicide tremendously. The NationalStrategy for Suicide Prevention is now well-

developed and ready to start moving forward. Butthe public has no idea, frankly, of the enormityof the impact of suicide or of the frequency of

mental illnesses and theirimpact. Measuring theimpact of suicide by thenumber of lives lost is thesimplest and starkest wayto understand the impact.

The World Health Organizations data show thatdeaths from suicide worldwide are approximatelyequal to deaths from war and homicide put

together. In this country, there are approximately60 percent more deaths annually from suicidethan homicide and twice as many deathsannually from suicide than from HIV/AIDS. Andwhile we understand that suicide is driven andprecipitated by mental illness and substanceabuse disorders, we still do not acknowledgethe impact of mental illnesses and suicide.

Our look at barriers to care caused us to look atthe burden of disability caused by mental illnesses.Our failure to deliver the right care for people

who end up on disability has an incredibleimpact. In fact, although Medicaid is the biggestpayer for mental health treatment, the biggestfederal expenditure for mental illness is over $20billion annually in payments for SSI and SSDIcombined. To put it bluntly, we are paying anincreasing number of people a huge amount ofmoney, but individually an inadequate amount in effect to stay disabled, because of the workdisincentives in the system. Recent WHO data

looking at theimpact of

mental illnesseson disabilityshow thatmental illnessis the greatest

illness-related cause of disability, followed closelyby alcohol and drug dependence, A lzheimers,and dementia. Much lower levels of disabilityare attributable to illnesses like cancer, heartdisease, or diabetes.

Barriers to care also include gaps in careand fragmentation of care for both adults andchildren. Care delivery has become increasinglycomplex in the last 25 years. Our commissionreview found no fewer than 42 different federalprograms that might be used at different timesby children or adults. Often, obtaining services

or coordinating these different programs conducted by various agencies with differenteligibility standards must be coordinated by theconsumer or family. And we expect people tonavigate this complexity when they are ill and attheir worst. This unintended complexity, coupledwith real gaps in care, is a striking problem thatled us to the blunt and perhaps controversialstatement that the system is in shambles.

Knowing the complexity of the mentalhealth system, the commission realized that theincremental reform that has brought us to thispoint cannot move us forward. What is needed,we concluded, is a transformation in ourapproach to care. The mental health messcannot be fixed via reorganization or by addingnew programs our conventional tools. Theconcept of transformation implying manychanges, at every level, over time emergedas a necessity.

But there are also new possibilities in mentalhealth care. Learning from testimony, fromresearch, from the surgeon generals report, and

also from Mrs. Carter, we determined that theidea or paradigm of recovery is a powerful forcefor change. When the commission talks aboutrecovery, we do not mean a simplistic picture ofcomplete wellness and remission for every person,immediately. Rather, we understand recovery tomean three things:

1. Recognition that some people more thanwe have historically appreciated doachieve complete recovery and remission.

2. Regardless of the seriousness of illness, a

recovery-oriented approach expects andfacilitates a meaningful and good life foreach person despite living with an illnessor disability.

3. The core and engine of recovery is hope expectations for better outcomes on behalfof the person, their family, and professional.

4


T hese days, the biggest

problems are outside the publ ic

mental health system.

Care delivery has become increasingly

complex in the last 25 years, and we

expect people to navigate thi s complexit y

when they are ill and at t heir worst.


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It was this understanding of recovery thatled the commission to propose a national visionfor mental health in America a future whererecovery and resiliency are the expectedoutcomes.

Given the magnitude of this change and thecomplexity of transforming care, the commission

proposes a set of national goals backed up byrecommendations to achieve these goals. Ourlogic is: Implement the recommendations toachieve the goals, and if we can achieve thesenational goals, then transformation will beachieved. The six goals are expressed in termsof future expectations:

1. Americans will understand that mentalhealth is essential to overall health.

2. Mental health care is consumer- andfamily-driven.

3. Disparities in mental health services areeliminated.

4. Early mental health screening, assessment,and referral to services are common practice.

5. Excellent mental health care is delivered,and research is accelerated.

6. Technology is used to access mental healthcare and information.

We know that we must and will seefederal leadership in a number of differentareas. One of the most complicated andintriguing recommendations that we havemade is upgrading state responsibility formental health, elevating responsibility formental health to the governors level on

a collaborative basis with the federalgovernment and others. This extends thestates responsibility for mental healthbeyond the block grant and the mentalhealth agency, reflecting the need to thinkabout mental illnesses in other sectors(e.g., prisons, schools, health care). Thischange is a tremendously complicatedprocess that cannot be simply legislated;it might require shifts in Medicaid,vocational rehabilitation, Social Security,and housing programs. But change may be

required in all these arenas. Some stateshave begun to think about the kind oftransformation that is required; a numberof states initiated state-level mental healthcommissions. We are greatly encouraged

by advocacy and professional organizationscoming together in Washington to create theCampaign for Mental Health Reform. Strongand well-aligned advocacy is essential to achievethe needed changes.

The commission also was mindful that much

can be done without waiting for Washingtonto act. There are many areas where federalleadership might be helpful but is not essential.For example, Id cite the goal of finally takingsteps to reduce disparities in access to and qualityof care, both with respect to race and place(especially in rural America). While some ofthe access questions require a broader approach,there is no reason that every mental healthprogram in the country cannot be taking stepsright now to better match our staffing with thepeople we serve and developing a welcoming

attitude about people from diverse backgrounds.Finally, if the work of the commission is to

become real, all of us in the mental healthcommunity must embrace Gandhis notion thatwe must become that change that we seek inthe world. We delivered a good body of workfor all of us to advance together. Now this workis in your competent hands. We look forward tothe collaboration that will make it real.

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Keynote Address


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Qu

estions

&Answ

ers Q

In thinking about the two commissions,the Carter commission and the NewFreedom Commission, how would you

characterize the most significant recommen-dation in the Freedom Commission that isdifferent from the Carter Commission?

ADr. Hogan: There are two. The firstdifference grows from the relativelynew awareness that recovery is a

realistic possibility for every individual if theright steps are taken with the right attitude. Thismeans approaching the development of everyindividual service plan collaboratively and withoptimism. It means new expectations aboutquality, such as consistent use of interventionsthat are scientifically proven. It means a focuson helping people achieve the changes they

desire in their lives. Recovery and resiliencymust become expectations, not ideals.

The second change that we see todaycompared to the time of the Carter commissionis that there is a paradox in how our well-intended reforms have made things so muchmore complicated. The issue of mental illness ispervasive. It needs attention in the schools, inprimary care, in the workplace, and in many

other sectors. Fixing the relatively narrowand separate public mental health system aloneis not sufficient. We have to work across theentire spectrum. This is more of an emergingidea than a recommendation. However, twomajor recommendations address it directly: thedevelopment of a more comprehensive state

plan backed by federal flexibility and providingfor comprehensive, crosscutting individualservice plans that provider a higher degree ofconsumer choice and control.

QWhy didnt the commission address theconnection between alcohol and drugaddiction and mental illnesses? People

should be trained in treating both illnesses,instead of treating them separately.

ADr. Hogan: The commission said quitestrongly that treatment, where thereare co-occurring disorders, should always

be integrated. It is the person who has to betreated, not the separate illnesses. We also needto use the skills of both consumers and familiesin the service delivery system and in theprocesses of recovery.

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Recovery is at the center of all of therecommendations of the New FreedomCommission report. When we look at

transformation of our mental health system tomaximize recovery for adults with serious mentalillnesses and children with serious emotionaldisturbances, it becomes very obvious that weneed to develop policy to coordinate systemicallythe role and functions of numerous agencies atthe state and local levels. This would increase

access clinically and also maximize the qualityof care.

Clinical services need to be coordinated andintegrated. Mental health is part of overallhealth, as mental health, substance abuse,and physical illness frequently co-occur.

While science has contributed significantly tothe development of new medications in the pasttwo decades, we must continue to encouragestrongly the development of new medications, notonly for mental health but also in the area ofsubstance abuse, as well as clinical and prevention

research. I feel optimistic that with the strength ofscience and research, treatment will continue toimprove and we will enhance recovery.

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Panel 1: Impl icat ions of Ment a l Hea l t hScience for Societ yRodolfo Ar redondo Jr., Ed.D .


Texas Tech University Health Services Center

Resear ch for Recover y: The Nat iona lInst it ut e of Ment al Heal t h Per spect iveT homas R. I nsel, M .D .

National Institute of Mental Health (NIMH)

Iwant to focus on one of the goals of thetransformed system: excellent mental healthcare is delivered and research accelerated. I

am particularly committed to establishing anevidence base of treatments and services thatactually work. There have been numerousstudies funded over the last decade from NIMHshowcasing which treatments are effective intreating different mental illnesses. At this pointin time, based on careful, rigorous studies, weknow that there are numerous psychosocialtreatments that work. For example, in comparing

relapse rates of different treatments for peoplewith schizophrenia, the combination ofmedication and family psycho-education hasa 20 percent relapse rate, whereas medicationalone has a 45 percent relapse rate. There issimilar data showing the effectiveness ofsupported employment.

However, this evidence base is not enough.Even when we have the evidence, thedissemination of that evidence is too

infrequent, or there is limited access to thetreatments that we know work. So it is importantto understand what barriers are impeding ourability to implement evidence-based treatment.

First, mental health needs are no longer inthe traditional mental health system. NIMHrecognizes that we must do research in the veryplaces where the public health need is greatest,such as schools, nursing homes, and the criminal

justice system.We now have aservices researchportfolio thathas begunto look at anumber ofnontraditionalsettings for mental health research. We arelearning how to do this effectively as wego. What we are trying to accomplish is thedevelopment of an evidence base of what worksin these different settings. We also need to

NIMH recognizes that we must

do research in the very places wherethe publi c health need is greatest, such

as schools, nursing homes, and the

criminal justice system.

Implications of Mental Health Science for Society


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develop the science of how to make sure thatsomething that works in the research setting canbe disseminated and practiced in a jail or aschool or in a homeless shelter.

What do we need from a research perspectiveto get to the point of recovery for the vast

majority of people

with mentaldisorders? Part of theneed is to providethe evidence basefor diverse settings

and implement what we know. That is still notenough. We still need the fundamentals. Wenow recognize that mental illnesses are medicalillnesses or, more specifically, brain illnesses.

The problem is that we do not have the toolsfor mental illnesses that we have for most othermedical illnesses. We do not have diagnostictests that are reliable. We do not have anunderstanding of the risk architecture the waywe do for heart disease or A lzheimers disease.We do not have strategies for prevention basedon understanding genetic risk. A lso, we do nothave treatments that are truly effective, safe,accessible, and targeted to individual needs.

While we like to say that mental illnesses arereal illnesses and that we have real treatments,the problem is that currently available realtreatments do not work for many people

with these real illnesses. So while there is animportant argument to be made about how toimplement the treatments we now have, it wouldbe selling all of us far too short if we stoppedwith the currently available treatments. Whatwe really need are treatments that are far moreeffective than current treatment options.

As an example, look at what happened withchronic lymphoid leukemia recently. Nowwe have a treatment that is more like a cure.

Suddenly nobody talks

about the problems withservice delivery, becauseservices are trumped byhaving a treatment that

actually does away with the disorder. It is timefor us to begin thinking about that as a model,how we now can begin to plan for the nextgeneration of interventions that would do away

with some of these disorders and not simply turnan untreated chronic disorder into a partiallytreated chronic disorder.

We need to model ourselves after the wayresearch is conducted in the rest of medicine.In cardiovascular medicine or cancer research,we identify molecular targets based on basic

research. Then we employ biochemical assaysto screen for small molecules that could be usedas new treatments. We then develop animalmodels to find out whether the small moleculetreatments are effective and safe. And ultimately,we go into human clinical trials. This is a processthat used to take about 12-15 years but has nowbeen condensed into a much shorter period oftime. It is proven to work. This approach hasworked in some cancers and it also has helpedreduce the rate of heart attack and heart disease.

This model is now being applied globally fordeveloping interventions for A lzheimers disease.

For mental disorders, however, the model oftreatment development has been almost theopposite. We always have relied on chanceclinical observations and then gone to clinicaltrials. We have used animal models but theseare often not satisfying. We then attempt toidentify molecular mechanisms, althoughgenerally, the mechanisms have more to do withthe mechanisms of drug effects rather than themechanism of the disease. Finally, we come up

with essentially me too compounds, compoundsthat are not truly novel but developed basedon something that already works. So perhaps itis no surprise that we do not have the kind ofbreakthroughs in this area that we have seen inother areas of medicine.

This is going to change. The first reason forthe change is because we now have the fullsequence of the human genome. This is alandmark event that will change everythingthat we do in biomedical science over the next

several decades. We now know that there are30,000 genes in the human genome. The genesonly represent a very small part of all DNA, onlyaround 1.5 percent, but a great number of these30,000 genes are expressed in the brain; as manyas 6,000 may be expressed only in the brain.

With the sequencing of the genome, we canactually go after individual genes to find outwhether they are involved in mental illnesses.We are beginning to discover that out of those


We need to model our selvesafter the way research is conducted

in the rest of medicine.

We now have the ful lsequence of the human genome.


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30,000 genes, there are many, at least 12 so far,that appear very important for susceptibility toschizophrenia. What is fascinating is that we hadnever heard of most of these genes before; someappear to be important for brain development,but many have functions that remain largelyunknown. Research will need to explore how

these various susceptibility genes confer riskfor schizophrenia.

One remarkable example is a gene calledCOMT (catechol-o-methyltransferase). TheCOMT gene codes for an enzyme that is foundin synapses where it breaks down dopamine,especially dopamine in the prefrontal cortex.Dopamine has been implicated in schizophreniafor the last 40 years. We know that there aresubtle variations in the sequences of most genes.In the case of COMT, there are two majorversions or alleles depending on whetherthe DNA sequence codes for the amino acidmethionine or the amino acid valine. Sometimessuch variations are unimportant, but in the caseof COMT, this subtle change in sequence altersenzyme activity, resulting in more dopamine inthe prefrontal cortex. People with one versionof the COMT gene appear slightly more likelyto develop schizophrenia. And, even moreinteresting, unaffected relatives of peoplewith schizophrenia who have the same COMTgenotype show many of the same abnormalities

on physiological and cognitive testing eventhough they do not develop the disease.Apparently, the COMT gene variations biascognition, but they may not specifically lead tothe disorder of schizophrenia. NIMH is interestedin this finding because the disability in peoplewith schizophrenia is correlated more closelywith cognitive deficits, such as problems withworking memory or judgment, rather thandelusions and hallucinations. A lthough problemswith cognitive function may keep people withschizophrenia from being able to work and

recover, we do not yet have a drug that targetsthe cognitive symptoms of this illness. Byunderstanding the molecular basis of this deficit,we can begin to design a novel treatment.

The second major breakthrough that willpermit research for recovery is the ability forthe first time to look at the brain in-vivo, to seewhat the living brain is doing. We are no longer

talking about a black box. Originally this wastrue for studying brain structure, but now wehave gone beyond structure to look at brainfunction at very high resolution. We now canactually do in-vivo brain chemistry to look atneurotransmitter content in different parts of thecortex. Amazingly, just in the past two months,

we have begun to visualize brain connectivity,providing an unprecedented opportunity to studyhow the brain develops in autism or schizophrenia.

New research with schizophrenia showcasesthe kind of work that will occur. For example, wecan now follow changes in the brain for childrenwith schizophrenia. Over the five years fromabout age 9 to age 14, there is a relativelyprofound change in the thickness of gray matter,but in people with schizophrenia, that goes out ofcontrol and theyend up with upto 10 percent orgreater deficitsin the amountof gray matter insome regions. These kinds of results suggest thatthis illness is not only neurodevelopmental butalso neurodegenerative. The loss of connectivity,from either gray matter or white matter changes,may be very important to the pathophysiologyof this disorder, particularly because the areasinvolved, like the dorso-lateral prefrontal cortex,

appear important for the cognitive deficits ofthis illness.

By identifying the genes that are involvedand understanding how the genes work tochange brain function, we should be able todevelop treatments as it is being done in therest of medicine. Research is our best hopethat, ultimately, every person with a seriousmental disorder will be able to recover. Let therebe no doubt, this is a long and difficult roadwith many blind alleys and many roadblocks.But we now have the tools to make progress at

an unprecedented rate. While excellent mentalhealth care needs to be delivered, this is also thetime to accelerate research at a pace that canfinally deliver the real promise of recovery forthe large population of people with mentaldisorders who are not helped sufficiently bythe treatments we have today.

9

T he second major breakthrough that

wi ll permit research for recovery is the

abilit y to look at the brain in-vivo.

Implications of Mental Health Science for Society


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s assistant secretary for health, I had theresponsibility and the opportunity for

developing Healthy People 2010. Ourfirst goal was based on the reality that our societyis aging. While we have done a great job ofincreasing the number of years of life people live,there was a need for far more focus on qualityof life. In the area of mental health, we see thatsome of the greatest challenges are in improvingthe quality of life. Our second goal was acommitment to work toward the elimination

of disparities in health among different racialand ethnic groups. Those two goals also pointout how critical mental health is, and our reporton culture, race, and ethnicity relative to mentalhealth pointed out that disparities in accesswere a barrier.

Our challenge is to find a way to get theAmerican people to focus on strategies for action.We decided to come up with a set of leadinghealth indicators similar to leading economicindicators. With the help of the Institute of

Medicine, we came up with 10 leading healthindicators. Each indicator has an objective ortwo associated with it, so there are measurableoutcomes associated with each indicator. Mentalhealth was listed as one of the 10 leading healthindicators for Healthy People 2010, recognizingthat in the context of general health challenges,mental health emerges as very critical.

I do not think that we talk about mentalhealth enough as mental health. We talk aboutmental illnesses and mental disorders. Mentalhealth should be defined as the successful

performance of mental activities in such a wayas to be productive in ones life and to developpositive relationships with other people.Additionally, mental health is the ability toadapt to changes in ones environment andto deal with adversity. When I look at thatdefinition, it says two things that are veryimportant. First, it says that there is a continuum

between mental health and mental disorders.Second, it says that none of us can take ourmental health for granted.

Mental health is fundamental to overall healthand well-being. One cannot have good healthwithout mental health. We have to treat it thatway. It is amazing how far we are from that interms of our policies, in access to mental healthcare, and in the need for comprehensive parityof access. Plato said, The greatest mistake in thetreatment of diseases is that there are physiciansfor the body and physicians for the soul, althoughthe two cannot be separated. This was a cry forconnection, for integrating mental health intooverall health and well-being.

The fact that mental disorders are common isa big surprise to a lot of people. When you thinkabout it, one in five Americans suffers from someform of mental disorder each year. That meansthat there is virtually no family who has notexperienced mental disorders or who is notstruggling with them everyday. That statistic

means that 44 million adults and approximately14 million children are experiencing mentaldisorders each year. Yet there are still so manypeople who do not appreciate the reality ofmental disorders. They either attribute it tocharacter weakness or, sometimes, spiritualdisorders. We have to point to all of theoutstanding brain research in the past severalyears showing the connection between mentaldisorders and changes in the brain.

Mental disorders are disabling. Research

points out the disability associated with mentaldisorders. This research base continues to grow aswe learn more every year about the tremendousimpact of different mental disorders, such asdepression, on our ability to be productive andto maintain positive relationships. There alsois an association between depression and otherchronic illnesses.


The Connect ion Bet ween Ment al Hea l t h an dGener al Heal t hDavid Satcher, M .D ., Ph.D .

National Center for Primary Care, Morehouse School of Medicine

A


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The relationship between depression,especially, and chronic disorders is an evolvingscience. I participated in the InternationalConference on Diabetes in the Caribbean backin April, and one commonality was the extentto which depression interferes with the abilityto successfully treat and control diabetes. Several

studies have shown how prevalent depressionis in chronic diseases. Fifty percent of peoplewho suffer from Parkinsons disease experiencedepression; more than 40 percent of cancerpatients and about 30 percent of people withdiabetes also have depression, according tosome studies.

The connection between mental health andgeneral health plays itself out in primary caresettings. Approximately 30 percent of primarycare patients are suffering from depression but arecomplaining of other illnesses, and depression isa major factor with many patients who have anytype of chronic disorder. Recent studies show adramatic impact of depression on patients withmyocardial infarcts. We are learning moreeveryday about the role that mental disordersplay in our general physical health.

There has been a lot of work on physicalactivity for prevention and health promotionrelative to physical diseases but little attentionpaid on the impact of physical activity onmental health. Recent studies out of Duke

University show that physical activity as acomponent of treatment for depressionenhances recovery significantly.

The good news is that in many cases we havethe ability to treat mental disorders. We havethe ability to return people to productive livesand positive relationships, and hopefully thatcapability will improve. Tremendous research isgoing on that will greatly enhance our ability todiagnose mental disorders earlier and better treatmental disorders. The bad news is that so many

people who suffer from mental disorders do noteven seek treatment, and the people who do seektreatment often have trouble accessing care. Soeven though mental health is a major componentof general health, people have a lot of difficultyin accessing quality mental health services.

Stigma is a critical issue in this country.Stigma has a tremendous impact not only onthe individual but on the family and community,as well. It impacts policies at the local, state,

and federal level. As we struggle to get Congress

to act on legislation like the Domenici-Wellstonebill, stigma plays a major role.

Culture counts when it comes to diagnosisand treatment of mental disorders. How peoplemanifest their diseases, how they cope, the typeof stresses they experience, and whether theyare willing to seek treatment are all impactedby culture. Stigma also is greatlyinfluenced by culture. I visited aprogram in Seattle called theAsian Counseling and Referral

Center, where they have targetedthe cultural aspects of mental health in thatcommunity. As a result, they have bridged somemajor gaps in getting people into treatment,focusing on primary care, partnering withmental health specialists, and training peoplein the community who speak the languageand understand the culture. This has allowedthem to break down barriers inhibiting access.

Professionals also are influenced by culture.Our culture impacts upon how we hear thingswhen we talk to patients. It can interfere withour ability to make accurate diagnoses and caneven impact our judgment about treatment.

This is a major component of disparities inquality of care.

In conclusion, I would like to remind us ofwhat Kay Redfield Jameson said in her bookNight Falls Fast. She wrote, The breech betweenwhat we know and what we do is lethal.

11

Stigma is a cri t ical issue

in t his count ry.

The Connection Between Mental Health and General Health


15/7012

he questi on ari s-

es whether earl y

r eatment whi le a

disorder was sti ll

The Impor t ance of New Epidemiol ogicalFindings for Pol icyRonald Kessler, Ph.D .

Harvard Medical School



16/70

The past decade has seen major growthin psychiatric epidemiology due to thedevelopment of new assessment methods

and the creation of a number of important cross-national collaborations that have allowed usto pool data and learn about subtle issuessurrounding mental disorders. We now know,

based on these studies, that mental disorders arevery common, that they are seriously impairing,and that most serious mental disorders begin inchildhood and adolescence.

The last of the findings mentioned in the lastparagraph, that most serious mental disordersbegin in childhood or adolescence, should not betaken to imply that these disorders are alwaysserious at the time they begin. Indeed, quitethe opposite is true. Most of these disorders arerelatively mild at first. A typical pattern might bea child having school phobia at the age of4-5, social phobia beginning in early adolescence,major depression beginning in middleadolescence, and secondary alcohol or drugabuse to self-medicate the mood problemsbeginning in late adolescence. A young personwith a profile of this sort often has secondary

problems in developmental roles, such asbecoming pregnant as a teen, dropping out ofschool, and becoming involved in a violentmarriage that ends in divorce.

This kind of profile does not begin with aserious emotional disturbance (SED), butwith a disorder (school phobia) that is usually

considered mild. Indeed, the hypothetical youngperson in this example might not meet criteriafor SED at any part of her childhood oradolescence, but only in early adulthood with theonset of substance dependence superimposed onanxious-depression. Epidemiological data showthat a young person of this sort seldom seeksprofessional treatment until their disorderbecomes severe. This could be many years afterthe first onset of their disorder in childhood.

The question arises whether early treatment

while the disorder was still mild would helpprevent progression to a serious disorder. We donot know the answer to this question becausemild childhood mental disorders are seldomtreated. No controlled study of treating mild

13

The Importance of New Epidemiological Findings for Policy


17/7014

Qu

estions

&Answ

ers


QDr. Satcher, how do you put legson these federal reports so we canimplement and make changes?

A

Dr. Satcher: People have to takethose reports and make sure they are

communicated at every level of oursociety. We need to have meetings like this andtalk about them. We also need meetings at thecommunity level, in churches and groups, andwe need to be involved in policy-making atthe local, state, and federal levels. It begins byeducating people at every level of society aboutthe importance of mental health and the factthat recovery is possible.

QWill these research findings actually

change the delivery of care, or willthey primarily be a background for new

pharmaceutical research? And if they do changethe care, how do you implement that type ofparadigm shift? Is anybody directing theirattention and goals toward that?

ADr. Insel: The answer to the firstquestion is that we will have to wait andsee the extent to which these findings

will play into new treatments. These findings

might not impact treatment only but diagnosisas well. One of the things we talk a lot about iswhether the genome era will allow us to beginto individualize treatment so we know whichtreatment is going to work for whom, and moreimportantly, which person may be particularlysensitive to adverse effects of drugs or othertreatments. How that will take place dependspartly on what the discoveries are.

How will it happen? It will happen througha number of different avenues, and one of thethings that should be happening more in the

future is to see more public-private partnerships.I have become concerned that in the last decadethe NIH has given drug development to thepharmaceutical industry. It is time for us totake back some of that and begin to think abouthow we can develop drugs not with a profitmotive but with a public health motive.

QI would like to hear you talk aboutgetting to the kids with mild disorders.In Philadelphia, we have 210,000

children in the public school system, and60 percent of them have serious behavioraldifficulties. We can identify at-risk children, butthe unwillingness of the community and thegovernment to address this issue is frustrating.

ADr. Kessler: Yes, that is true. I amspending a lot of time lately conductingepidemiological surveys in the

workplace showing the cost of mental illnesses.There has been a lot of argument in the lastdecade about how much it costs to treat mentalillnesses, and my research is showcasing the costof not treating it. We are now engaged in a verylarge demonstration project with some majorcorporations in America, screening over100,000 workers, getting depressed workersinto treatment, following them for two years,

and documenting how much money it makes forthe company. It is a human capital investmentthat makes corporations money.

I also am doing similar kinds of studies withchildren, but I cannot figure out who to talk to.With the employer it is very easy, because I havethis dollar and cents impact. With the children,the school does not think it is their problem. Soit is a real tough thing to figure out who to go to.


18/70


19/7016

childhood disorders has ever followed subjectsinto adulthood to evaluate the long-term effectsof treatment.

Even more disturbing than the pervasive delaysin treating early-onset disorders is the fact thattreatment quality is often quite poor when peoplewith these disorders finally get into treatment.Demonstration projects have shown thattreatment quality can be improved dramatically

with relatively modest interventions. However,these model programs seldom are adopted byhealth plans due to a lack of willingness bylargely institutional purchasers to pay theadditional costs of these programs. This meansthat institutional will is needed to demand thatthese programs be put into place and to monitorthe ongoing quality of these programs.

Little evidence exists that this institutionalwill is going to develop. Indeed, an oppositeinclination appears to exist among the architectsof the American Psychiatric Associationsplanned revision of the Diagnostic and StatisticalManual of Mental Disorders, who want toremove mild disorders from the diagnosticsystem. The thinking is that so many people

meet criteria fora mentaldisorder thatsociety cannotafford to providetreatment to allof

them. Triage rules are needed, which thearchitects of the DSM propose to implementby focusing treatment efforts on individuals withserious disorders.

But this might be a mistake, as the cost-effectiveness of treating mild disorders could behigh. We do not know whether this is the casebecause, as noted above, no systematic long-termresearch has been done to evaluate the long-term

effects of treating early-onset disorders. We doknow from longitudinal research, though, thata high proportion of mild cases among youngpeople evolve into more serious cases over time.

A disturbing epidemiological pattern is thatthe earlier the disorder starts, the longer it takesto get into treatment. People who developspecific phobias as children, for example, oftenget into treatment only in their late 20s, whereas

people who have acute onset phobias in theirearly 20s typically get into treatment by theirmid-20s. This pattern is presumably due to afigure-ground problem: that people adapt toearly-onset disorders and dont recognize themas being as much a problem once they reachadulthood as they do problems that have adultonsets. This is disturbing, especially becauseearly-onset disorders often are more severe andpersistent than later-onset disorders. This meansthat the people with the greatest need for earlyintervention are the ones who are likely to delay

longest before seeking treatment.

Despite this disturbing picture, there are somepositive trends. The epidemiological evidence isclear in showing that delays in initial treatment-seeking have decreased in recent years. Thispresumably reflects decreases in stigma andincreases in public awareness that mentaldisorders can be effectively treated. Nonetheless,delays in initially seeking treatment are stillpervasive, especially for early-onset disorders.We need to develop school-based early screening,

outreach, and treatment programs to dosomething about this. We are not takingadvantage of the opportunity for earlyintervention provided by school systems. Asnoted above, we do not know if earlyintervention works. As a result, research anddemonstration projects are needed to develop,evaluate, and disseminate effective earlytreatments. Although these efforts might be seen


Too many Ameri cans wai t half

their li fetime for someone to notice that

their behavior was not simply a matter

of poor choices but part of an i ll ness.

Dinner Addr ess: Achieving t he Ment a l Hea l t hSyst em Tr ansfor mat ion Toget her : SAMHSAsAct ion Agenda and Par t ner sh ipsCharles Curie, M .A ., A .C.S.W.

Substance Abuse and Mental Health Services Administration (SAMHSA)


20/7017

as diverting valuable resources away fromresearch and treatment of more serious disorders,the public health implications of earlyinterventions with mild cases could be profound.

I

t is a privilege to be here for a variety ofreasons. One of those reasons is the fact that

The Carter Center and the Mental Health

Program in particular has been a true partnerin helping us strive to build a system of care thatembraces resilience for children and recoveryfor people with serious mental illnesses. Theessential element to everything that The CarterCenter does is hope, and I see building hope asbeing one of the major tenants of your mission.In the absence of hope, recovery is lost.

It is also a privilege to serve President Bush andHealth and Human Services Secretary Tommy

Thompson. They clearly know that treatment

works and recovery is real! I also want torecognize the support SAMHSA has receivedfrom the White House and Secretary Thompson.Some have questioned whether we at SAMHSAwill get the support we need to achieve ourvision of a life in the community for everyone.Well, I am happy to say we already are.

When the president announced thecommission and defined the scope of responsi-bility, he spoke frankly about the poor qualityof mental health care in this country in terms ofits fragmented delivery system. He drew upon thecommon example of a14-year-old boy who suffered from severedepression and began experimenting with drugs,not realizing that he was self-medicating thedepression to alleviate his symptoms. He was anhonor student whobegan slipping in school and eventually gotinto trouble with the juvenile justice system.

This young man, like many Americans of allages, slipped through the cracks. Was he put intorehabilitation programs? Yes. But he was treated

for the drug abuse and not for the underlyingissue of depression. And he ended up graduatinginto the adult criminal justice system in his 20s.He was not diagnosed until age 30 with bipolardisorder. Once diagnosed and receivingappropriate treatment, his symptoms werealleviated and he began to regain his life.

On one hand, some people describe this asa success story. But I cant help but think aboutthe 16 lost years of his life and how the systemfailed. If he were diagnosed earlier and receivedthe right treatment, perhaps he could havecompleted high school, gone to college, and atthe age of 30, be raising a family and claiming a

career instead of just starting to think about howhe was going to fit in again once he had hissymptoms under control.

Too many Americans wait half their lifetimefor someone tonotice thattheir behaviorwas not simplya matter ofpoor choicesbut partof an illness, an illness that we can dosomething about.

Clearly, we have made progress and we willcontinue to make progress by pushing for what isright for the people we serve. The simple concept doing what is right for the people we serve isthe concept that steered the New FreedomCommission through many tough decisions,leading ultimately to its final report.

Now, the White House and SecretaryThompson have given SAMHSA the lead role toconduct a thorough review and assessment of thefinal report. Our goal is to implement appropriatesteps to strengthen our mental health system.

The commission was asked to give the mentalhealth system a physical, and they did it. Thediagnosis: fragmentation and disarray. Thecommission report found the nations mentalhealth care system to be well beyond simplerepair. It recommends a complete transformationthat involves consumersand providers,policymakers at

all levels ofgovernment, andboththe public andprivate sectors.

The mentalhealth systemrecovery planwill require theimplementation of a to-do

Recovery needs to be defined in the

terms of the consumers, famil y members,

chil dren, and parent s who receive

services from our system.

Achieving the Mental Health System Transformation Together: SAMHSAs Action Agenda and Partnerships


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18

list currently being developed by SAMHSA. Theto-do list will form an action agenda to achievetransformation of mental health care in America.I recognize transformation is a term withdifferent meanings to different people. Often, itis just a simple synonym for change. There is alsoa mathematical definition of transformation, the

change into another form without altering thevalue. Our definition of transformation willsimply be reconsidering, reshaping, and changingthe ways in which the mental health system

provideseffectivetreatment andhow consumersand familiesrecover. Weneed to be

thinking about how we operationalize recovery

fromthe standpoint of public policy as well aspublic financing.

How we first define recovery is critical.Recovery needs to be defined in the terms ofthe consumers, family members, children, andparents who receive services from our system. Myfirst professional position included running anaftercare group. The goal of that aftercare groupwas to help those individuals coming out of the

psychiatric hospital adjust to the community.I remember asking them what they neededto deal with their mental illness. What wasimportant to them? It was interesting to heartheir reaction, because they did not say theyneeded a psychiatrist. They did not say theyneeded a psychologist or a caseworker. They didnot just say they needed a program. They definedwhat they needed in terms of what they wantedin their life. They wanted a job. They wantedmeaningful daily activity that helped give theman identity. They wanted a place of their own

in the community. They wanted standing inthe community, to be part of a neighborhoodand a community. They wanted a safe, decentplace to live. Finally, they wanted connectedness.

They wanted to have a relationship with familyand friends.

When you think about your own life and whatyou want for those of us who are not mentally ill,for those of us who have not struggled with thatdisease, those are the things all people want: a

job, a home, and people who are important to us.

This gives us an idea of what we need to begindoing in our service delivery system to helppeople truly attain recovery.

I am a little concerned that there has beensome criticism that recovery was not the rightthing for the presidents commission to emphasizein our final report. Some say we are offering falsehope, because not everybody with a mentalillness will fully recover from their disease. Well,of course, some will not fully recover. The diseasecan be very severe, chronic, and disabling. Butrecovery is both an outcome and a process. We

need to define the process of recovery and whatwe are doing in the system to help that process,because in the process of recovering, people learnhow to manage their illness and manage theirlife. That is what we are talking about. Peoplewill be emerging and arriving at different levelsand at different stages of the process. It is not

As a compassionate nati on,

we cannot afford t o lose the opport unit y

to offer hope to those fight ing for their

l ives to obtain and sustain recovery.


22/7019

false hope. It is finally realizing hope andunderstanding how hope moves the processalong.

This transformation will require a shift in thebeliefs of most Americans. It will require thenation to expand its paradigm of public andpersonal health care. Everyone from public

policy-makers to consumers and family membersmust come to understand that mental health is avital, integral part of overall health. A long withthis new way of thinking, Americans must learnto address mental health disorders with the sameurgency as other medical problems. We aretalking about a societal change here, one thathas to begin with the professions, withgovernment, and in academia. It has to be in thegroundwater of our society.

The report also challenges us to close the 15-

to 20-year lag it takes for new research findingsto become part of day-to-day services for peoplewith mental illnesses. Waiting for research tomake its journey down an already cloggedpipeline equates to losing a generation of peoplewhile we transition from what we know to whatwe do. Many Americans are done a disservicewhen their quality of life remains poor whilethey wait for the latest research to crawl intotheir communities.

The report also challenges us to harness thepower of health information technology, toimprove the quality of care for people withmental illnesses, to improve access to services,and to promote sound decision-making byconsumers, families, providers, administrators,and policymakers. And it also challenges us toidentify better ways to work together at thefederal, state, and local levels to leverage ourhuman and economic resources and put them totheir best use for children and adults living with,or atrisk for, mental illnesses. Most of all, the report

reminds us that mental illnesses are treatableand recovery can be the expectation. As acompassionate nation, we cannot afford to losethe opportunity to offer hope to those fightingfor their lives to obtain and sustain recovery.

To lead that effort, we have assembled atransformation task force. We already areworking with relevant federal agencies todetermine ways to improve the flexibility

required by the states and develop the incentivesto bring the full force of resources available tomeet the needs of people with mental illnesses.

I am counting on the relationship thatSAMHSA and other federal agencies have withour state partners. States are where the action iswhen it comes to mental health and thus states

have an awesome responsibility. We know thatthe new state agendas must beconsumer- and family-drivenrather than bureaucraticallybogged down. Consumers ofmental health services andtheir families must stand at thecenter of the system of care and drive care. Wehave talked about consumer- and family-centeredcare for years, but we dont really know what thatmeans. When we begin to say the consumer andtheir families must drive the care and drive thesystem, that begins to strengthen and clarify theirrole. The result should be more of our familymembers, co-workers, neighbors, and friendsliving a rewarding life in their communities.

Over time, with strong leadership, enoughpeople will be thinking of new ways anddoing things differently. The new will becomethe norm.

We need to be careful not to rush towardchange frantically, grabbing at what wecan.We need to bestrategic whilepressing onward.We need to havecarefulplanning. Irefer to aquote by Dr.Gary Tisler,who was onthe Carter

commission.Dr. Tislermade anobservationthat many of therecommendationsof the twocommissions aresimilar. It is troublingthat after 25 years we still

T hi s commission report

gives us the opportuni ty to

find common ground.

Achieving the Mental Health System Transformation Together: SAMHSAs Action Agenda and Partnerships


23/70


20

The challenge for us today is to harness thepersonal and the collective responsibilityfor the strategic implementation of this

report. To paraphrase a probably overusedphrase, it will take a village to transform a system

that has been inshambles. And thisvillage must be builton collaborationsand on relationships.I think we mayanticipate that someof the relationships

will be uneasy relationships; nevertheless, wemust build on them to promote better outcomesfor people with mental health disorders.

We heard earlier about transformingconcepts in the commission report, such asrecovery and resiliency as an expected goalof mental health care and the need forcare to be consumer- and family-driven.We heard of the urgency to providemental health care in other service systems

such as child welfare, juvenile justice,and primary health care where we see aburgeoning of mental health problems.

Today we are going to speak aboutgoal five of the commission report excellent care is delivered and research isaccelerated. This is another transformingconcept. Research has yielded criticaladvances in our understanding of humandevelopment and behavior; research hasbeen fundamental to the development

of effective treatments and services.Yet we know it takes about 15 to 20years between the discovery of effectivetreatments and the implementation ofthese treatments into routine practice.While we have generated considerableknowledge regarding effective services andsupports, we are moving these practicesinto service delivery far too slowly.

This panel will address the challengesoftransporting research to practice. They willexamine the science-to-services gap and theparallel gap from services to science. They willlook at the concepts of evidence-based practiceand practice-based evidence. Structural issuessuch as financing, human resource development,or organizational inertia that impede change willbe touched upon as well as strategies for how towork with local communities and providers todevelop services that better meet the needs ofthese communities. The successful disseminationand implementation of effective treatments,services, and supports is essential to the provisionof high-quality mental health care.

Panel 2: Moving Science t o Ser vicesLarke N. Huang, Ph. D.


Georgetown University Child Development Center

We know i t t akes about 15 to

20 years between the discovery

of effective tr eatments and the

implementation of these treatments

into routine practi ce.


24/7021

This symposium is really about each of us

looking within ourselves to answer afundamental question, which is what

can we do to bring about the transformationcalled for in the presidents commission report.As a researcher, I will talk about evidence,both what it can and cannot do in bringingabout change in mental health policy. I will focuson the gap between how the research communityand the rest of the world understands and usesevidence and how we might use the symposiumas a step toward bridging that gap.

The executive order establishing the PresidentsNew Freedom Commission on Mental Health in2002 placed evidence in a central role in howthe commission should approach its charge.

This notion of grounding the report in evidenceis actually quite extraordinary. It reflectsrecognition that we are finally beginning todevelop a science base that is broad and deepenough to support clinical and policy decisions.

Evidence also plays a central role within thereport itself. Each of the subcommittees commis-sioned a background paper from a researchexpert, and these papers both help inform andbolster the recommendations of the final report.

This issue of translating science to practicehas been a major focus in recent years ina number of major federal agencies. However,this gap between evidence and practice has beenfar easier to identify than it has been to close.Why is this the case? I think it is important tolook at how we have been thinking about whattranslation actually is to understand the problem.

To date, translation has been thought of as a top-

down process, moving from research to practice,policy, and communities. We researchers feellike we keep speaking, but no one seems to belistening. So we look for a way to make ourvoices louder. Translation becomes a megaphonethrough which we hope to be heard among thedin of competing demands faced by clinicians,managers, and policy-makers.

But being at The Carter Center brings

another metaphor to mind. This is the notionof translation as a dialogue between those whodo research and those who use the findings. Thisis translation in the most concrete sense of theword. It is the process of interpreting betweenlanguages and between the cultures of researchand practice. Most of the rest of my talk will seekto understand how these two different worldsthink about evidence.

Lets start with a few terms. What is evidence?The answer to this question will vary considerably

depending on whom you ask. The researcherthinks of evidence primarily in terms of its levelof truth or validity. Courses in evidence-basedmedicine teach about the hierarchy of evidence,with randomized control trials as the goldstandard of truth.

Most of the rest of the world views evidence ina much more pragmatic manner. As found in theAmerican HeritageDictionary, evidence issimply a thing orthings useful in

forming a judgment.The key operationalterm here isuseful. Itdoesnt have to be perfect. It doesnt have tobe supported by randomized trials. It just has tohelp us to make the best decisions we can make.

How do we decide which evidence issignificant? Anyone who has ever read ascientific article knows that results are statis-tically significant if P is less than .05, whichmeans that there is less than a 1-in-20 likelihood

that the findings were simply a result of chance.This cutoff point, which was first proposed by thestatistician R. A. Fisher in 1925, is actually anarbitrary convention. However, this point hasbecome a very convenient way for the researcherto sort between what needs to be paid attentionto and what can be ignored. The fact thatit is called significant tends to give us theimpression that it is the same as clinical

Evidence and Tr ansfor mat ionBenjamin Dr uss, M .D ., M .P.H .

Rollins School of Public Health, Emory University

We are final ly beginning to

develop a science base that is

broad and deep enough to supportclinical and poli cy decisions.

Evidence and Transformation


25/7022

importance. In reality, statistical significanceand clinical importance are not one and thesame thing.

The rest of the world cannot afford suchcertainty. In our daily lives we need to makedecisions under conditions of varying and oftenhigh levels of uncertainty. Most of us spend our

days making the bestdecisions that wecan under imperfectconditions. Our criticalP value is not P lessthan .05, but P less

than .5. In other words, is this decision moreor less likely to give us the outcome that weare looking for? If I check the weather in themorning and see there is a 60 percent chance ofrain, even though I am a researcher, that is goodenough for me to bring my umbrella. I do notneed 95 percent certainty to have the sense tocome in out of the rain.

The research process is slow, methodical, andconservative. And this is a great strength. Itprovides multiple safeguards that keep researchersfrom drawing conclusions that may be incorrector dangerous. However, the rest of the world doesnot have the luxury to wait 17 years to makedecisions. A recent study found that policy-makers overwhelmingly identify timeliness andrelevance as the most important qualities that

would lead them to use information in theirdecisions. A chief executive officers time horizonis about a year, and chief financial officers time

horizon is typicallythe next fiscalquarter. Consumersimpatient with theslow pace of theresearch process

are increasingly using the Internet to learn aboutand discuss new innovations that will not bepublished in literature for many years.

When researchers think about moving evidenceinto practice, our usual goal is to transplantthe innovation into the real world with as fewchanges as possible. We call this notion fidelity.But in real-world health and mental healthsettings, perfect fidelity is rarely practical, andI would argue that it also is not desirable.

In a recent Journal of the American MedicalAssociation (JAMA)article about disseminatinghealth interventions into routine settings, DonBerwick suggests that we substitute the notion ofdiffusion with the term reinvention. To work,he says, changes must not only be adopted locallybut adapted locally. Reinvention is a form of

learning, and, in its own way, it is an act of bothcreativity and courage. For reinvention to occurwhen we researchers develop an intervention,we need not only to expect but actively toencourage local sites to streamline the modeland tailor it to their local environments.

Let me give you an example. An enormousamount of work has been done in the area oftranslation in the treatment of depression inprimary care. More than a dozen randomizedtrials demonstrated that team-based, patient-centered approaches known as collaborative careimprove the quality of medical outcomes andtreatment for depressed patients. And yet themodels have yet to be widely adopted. Even inthe settings in which the studies are conducted,these models are not sustained after the researchprocess ends. I think one of the challenges inhelping these models be used more broadly is todemystify them by deemphasizing fidelity andencouraging more local experimentation. Weneed to help local leaders read the collaborativecare literature with an eye toward what is most

relevant to their own organizations. We mustallow them to make incremental changes ratherthan simply offer them an all-or-none deal.

When researchers publish a study, we areconvinced about the validity and importance ofthe findings. The need for action often seemsself-evident to us. We are then often surprisedand disappointed that the articles do not havethe impact that we would hope. However,science itself warns us that evidence is only thefirst step in transporting policies and practices.Everett Rogers, who is a professor of communi-

cations at the University of New Mexico, hasdescribed the many determinants of how newinnovations are widely adopted in society. Henotes that the characteristics of the innovationare only part of the story. How they diffuse or arereinvented is highly dependent on the nature ofthe potential adopters and the broader systeminto which they are being introduced.


Reinventi on i s a form of learn ing,

and in i ts own way, i t i s an act of

both creati vity and courage.

Science itself warns us that evidence

is only the fir st step in tr ansport ing

pol icies and practi ces.


26/7023

In a recent articlein the journalHealthAffairs, politicalscientists RoganKersh and JimMorone examinedthe common

elements of publichealth policymovements across arange of issues suchas smoking andnational policies onalcohol and illegaldrugs. They describea series of what theytermed triggersthat need to betripped before

change can occur.Medical science isonly one of thesetriggers. Others include development ofconsumer groups, politically active interestgroups, and increased awareness and interestin the general public. As you hear these, thinkabout the parallels of mental health with thegrowth of the consumer movement. I believe theenvironment is becoming increasingly ready forthe sort of major transformation we have seen,for instance, in national tobacco policies. We

researchers need to make sure that as these policytriggers are tripped, we have the right evidence athand for fostering constructive policy change.

If translation is a dialogue, then we from theresearch community can use this symposium tolisten to all of you to learn how to better developevidence that is useful, timely, and relevant toyour needs.

But we need to do more than just give youevidence. We need to allow you to develop anduse your own data more effectively. Examples of

this might include helping a mental health clinicstudy its claims data to better understand itsclients. It could be guiding policy-makers doingan informed survey of the literature on key issues.It can be teaching a consumer to more effectivelyuse the Internet to understand his or her owncondition. This is the sort of homegrown

evidence that actually will be used to improvecare, because it is addressing needs that are,by definition, timely and relevant. It also willbe sustainable because done right, it can becontinued locally even after we researchers gohome. Largely what I am talking about hereis an exercise in power-sharing in which weresearchers must be willing to surrender ourmonopoly on producing and understanding

evidence.Finally, I want to challenge those outside the

research community to think about ways ofadopting and adapting evidence in your day-to-day work. How canyou work towardgoal number five ofthe New FreedomCommission report,which advocatesadvancing the use ofevidence-based practices? And more generally,how can you use evidence as a tool in achievingthe other goals outlined in this report? Evidencemay not be the only step needed for change inour mental health system, but used properly, itcan be a powerful tool for such a transformation.

I chal lenge those outside the

research communit y to thi nk about

ways of adopting and adapting

evidence in day-to-day work.

Evidence and Transformation


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24

Historically, it has been a challenge toconvince the public that children andfamilies have real problems and an even

greater challenge to get people to believe that weactually have some answers. What the work onthe surgeon generals report did for me was tohelp me glean these messages of hope for kids.With that hope, we can translate our researchfindings into real-world clinical practice.

Mental disorders are prevalent in youth. InNorth Carolina, we havefollowed youth from ages 9through 16 and found that37 percent have had apsychiatric diagnosis. Wealso now know from an

ongoing national survey of 6,000 kids that in thechild welfare system at least 50 percent of thoseyouth need clinical treatment. Also, almost two-thirds of those in the juvenile justice system haveclinical needs.

So what are we doing about getting kids

into care? In the last 25 years, we have movedfrom about 3 percent of children being seenin mental health services up to around 8percent. We also have moved from an averageof three visits per treatment episode to 11 visits.However, even with this progress, there isstill a lot of unmet need. There also are racialdisparities in obtaining treatment, with Hispanicyouth being the ethnic group least likely toreceive services. In addition, there is widevariation in the rates of children receivingcare across states.

Evidence shows that we have a choice ofeffective interventions for four of the mostcommon disorders in youth: depression, attentiondeficit hyperactivity disorder, anxiety, anddisruptive behavior. This evidence has influencedservice delivery. For example, psychoanalyticapproaches are waning and behavioralapproaches have gained popularity. Ecologicalmodels are commonly applied for youth with

severe emotional disorders where multiplesystems are needed to work together andintervene. We also have respectable evidence forthe effectiveness of community-based programs.

We find that specific interventions areeffective for specific disorders. For example,cognitive behavior therapy is an effectivetreatment option for depression, anxiety, andtrauma, and behavioral approaches directed atparents and teachers work with children withADHD and disruptive behaviors. The realquestion is how many of these interventionsare being taught in graduate schools andcontinuing education? Are there even materialsfor adequate instruction?

Unfortunately, there is still a reliance oninstitutional care for children, such as hospitals,residential treatment programs, boot camps, anddetention centers. This is in spite of evidencethat suggests that institutional care is noteffective for many childhood mental disorders.Until the community-based alternatives are truly

in place, we will continue to see a significantnumber of our youth being sent away at greatcost and minimal effectiveness.

With all the different types of treatmentoptions available, is there any way to simplify? Avery clever psychologist in Hawaii by the nameof Bruce Chorpita and his colleagues looked atall the evidence-based literature for commondisorders and identified core components fornumerous types of interventions. He came upwith 26 core components of effective treatment(e.g., tangible rewards, communication skills,limit setting, and maintenance). This couldmean there are only 26 kinds of techniquesthat service providers have to learn. However,it is another matter to put them togetherappropriately. An approach to tailoringinterventions to the child on a component-basedapproach is currently being tested in Hawaii.

Readiness for Evidence-based Pr act ice in Chil d a ndAdol escent Ment al Heal t hBarbara J. Burns, Ph.D .

Duke University Medical Center

Unfort unately, there is

sti ll a reli ance on insti tu ti onal

care for chi ldren.


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How do these interventions spread? Lets takethe example of family preservation. There werepromising findings from uncontrolled studies,and based on them, family preservation becamefederal legislation. Then controlled research wasconducted, and the results were not very positive.It is very hard to undo federal legislation, so

family preservation prevailed long after it wasknown to be ineffective.

A little different lesson comes from treatmentin foster care. The people at the Oregon SocialLearning Center did a great job with the efficacystudies. Professional parents are paid about$30,000 a year to take in a fairly disturbed childand work together with the natural family toavoid placement in an institution or out of thecommunity. The treatment spread and standards

were developed for implementation. Yet thereis a large gap between the promise of treatmentfoster care and the reality. We have justconducted an observational study in NorthCarolina and found that treatment foster parentswere reactive to crises. They were not adequatelytrained in proactive approaches to preventing

behavioral problems. The implications hereare that quality monitoring and proper trainingare required.

As a final example, lets look at eye movementdesensitization and reprocessing (EMDR). Theuse of EMDR spread like wildfire; however, therewas little evidence for the technique. Very littleformal training was required, and it was easy tolearn, thus accounting for its spread.

Readiness for Evidence-based Practice in Child and Adolescent Mental Health


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According to Backer, the principles offacilitating the dissemination of interventionsare:

1. User-friendly communication.Weneed readable training materials that areinteractive and utilize electronic capabilities,such as the Internet.

2. User-friendly evaluations.Keep theresearchers at some distance until youknow what outcomes you want and youhave a sense of an approach to monitoringquality. Quality monitoring is essential,but do not let the research weigh theintervention down.

3. Resource adequacy. We need enough policysupport and enough funds to provide thetreatment, to provide the training, and toconduct the evaluation. I see examples

where all three are neglected. Neglectingany one of them is a risk for failure.

4. Addressing the complex human dynamicsof change. Change is not easy, and manyproviders may resist change. Change makespeople anxious, especially if they are alreadycomfortable with the way things currentlywork. It is important to communicateclearly the benefits of change and providean environment in which staff cansuccessfully change.

An elaborate initiative by SAMHSA inthe adult arena for effectively spreadingtreatment innovations was the development

of implementation resource kits. This involvedcreating a state-level infrastructure for training inconjunction with training materials that are user-friendly and comprehensive. The kits took abouttwo years to develop with a lot of input from allthe stakeholder groups. They include a video tointroduce the intervention, a video to train the

clinician, a manual for the administrator, and amanual for the clinicians. In one state, anotherlocal approach is mentoring utilized for ongoingtraining, where established community treatmentprograms act as a mentor to new ones. It is mygreat hope that we will be able to utilize theabove model to engage in similar work forselected evidence-based child interventions inthe near future.

To conclude, here are the big future questions:

Can consensus be achieved about appropriate

and effective clinical practice? Can necessary and effective training be

integrated into graduate and continuingeducation?

Will critical stakeholders support theimplementation of evidence-based practice?

Can we create a better balance betweeninternal and external validity in treatmentdevelopment research?

I do not have the answers. I do hope we cancome up with them together.

Recover y-based Innovat ionLarr y Fri cks

Georg

the carter centre vision .pdf

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