out of the loop…

Posted on Friday 16 May 2014

I realize that nosing around the NIMH RAISE Project is a little different than many of the things I write about here. Usually, I’m rooting around looking for corruption peeking out from behind the spin. But here, I’m looking for something else. I want these early psychosis programs to work. A career of seeing what the psychosis of young adults we call Schizophrenia can do to a life has been difficult. The medications available can eliminate the most troubling symptoms but they’ve been overutilized and are no long term solution. And I’m sure that the place to to start is early – before the psychosis erupts if possible, but certainly as soon as it shows its head. I had such a case [1. from n equals one], and I’m convinced that the course of the illness can be altered. But, thus far, no one has been able to construct a viable  program that endures. There are all kinds of initiatives around the world trying right now – notably Dr. McGorry’s program in Australia [which gets mixed reviews]. RAISE is apparently our current shot, and I want it to be more than simply another well-intentioned-but-likely-to-fizzle program going large prematurely.

I found things that explain some of what was going on with RAISE by looking at some old NIMH News releases, but the cost accounting and the details of how it all happened still elude me:
NIMH Science News
July 21, 2009

The National Institute of Mental Health [NIMH] is launching a large-scale research project to explore whether using early and aggressive treatment, individually targeted and integrating a variety of different therapeutic approaches, will reduce the symptoms and prevent the gradual deterioration of functioning that is characteristic of chronic schizophrenia. The Recovery After an Initial Schizophrenia Episode [RAISE] project is being funded by NIMH with additional support from the American Recovery and Reinvestment Act [ARRA]. RAISE is a model example of how money from the Recovery Act can accelerate science related to public health problems and potentially benefit those citizens most in need…

RAISE will test approaches that involve intervening immediately upon first diagnosis, systematically incorporating the range of options that are now available in a more piecemeal fashion to people with schizophrenia. These options include medications, psychosocial treatments, and rehabilitation, including teaching patients and families how to manage the disease. The hope is that such a coordinated approach tailored to each individual and sustained over time may make lasting differences in the acceptability of treatment and overall function…

Two research groups will work in parallel to develop and test potential intervention approaches. One group will be led by John M. Kane, M.D., of the Zucker Hillside Hospital, Feinstein Institute for Medical Research, Manhasset, N.Y. The second group will be led by Jeffrey Lieberman, M.D., of the Research Foundation for Mental Hygiene, Inc., New York City. The research teams feature national and international collaborations, with treatment to be delivered in up to 30 clinical sites across the United States. Recovery Act funds will underwrite the initial two phases of the trial, during which the investigators will refine the interventions with input from stakeholders and conduct a feasibility study to demonstrate that each intervention can be fielded in real world community treatment settings and be evaluated in a randomized clinical trial design. With long-term funds committed by NIMH to complete these phases plus a full-scale clinical trial, funding for the study is $40 million…
And this next release clarifies some of what was bothering me earlier [a fabrication?…, where’s the beef?…]. You’ll notice that the RAISE Connection links [in red] don’t work. That site has been taken down. But through the wonders of the Wayback Machine, you can see the iterations of the site from January 17, 2011 thru December 30, 2013 showing the multiple changes in personnel, locations, and services described in the earlier posts:
NIMH Science News
August 9, 2011

Researchers continue to make progress in the NIMH Recovery After an Initial Schizophrenia Episode [RAISE] Project, which seeks to intervene at the earliest stages of illness in order to prevent long term disability. Recent refinements to the two RAISE studies will ensure that RAISE continues efficiently, and generates results that will be relevant to consumers and health care policy makers.
    The RAISE Early Treatment Program [ETP], led by John Kane, M.D., of the Feinstein Institute for Medical Research in Manhasset, NY, is now conducting a full-scale, randomized controlled trial comparing two different ways of providing treatment to people experiencing the early stages of schizophrenia and related disorders. Both types of treatment emphasize early intervention but feature different approaches for initiating and coordinating care. Treatment may include personalized medication treatment, individual resiliency training, and supportive services, such as family psychoeducation and education or employment assistance. A total of 34 study locations are scattered throughout the nation and are currently recruiting patients. ETP plans to recruit at least 400 patients for the study for up to two years of treatment and evaluation.
    The RAISE Connection Program [Wayback Machine], led by Susan Essock, Ph.D., of Columbia University, will identify ways to effectively integrate a comprehensive early intervention program for schizophrenia and related disorders into existing medical care systems, as well as how such programs benefit individuals receiving multi-element treatment. With the goal of recruiting up to 100 participants in Baltimore, Md., and New York City, the Connection Program will provide participants with individually tailored medication treatment, illness management strategies, education or employment assistance, supportive services for participants and their families, and follow-up care for up to two years. The Connection Program will also carefully document what is needed to implement the key aspects of the intervention in a community setting. If the program proves successful, the information generated will be a resource for state administrators who may wish to incorporate the intervention as a core component of their health care system.
The ETP and Connection Programs aim to improve our knowledge of effective intervention approaches and increase the likelihood of rapid adoption and implementation of a multi-component treatment package for the early stages of schizophrenia. The two studies have the shared goals of improving clinical outcomes for patients and informing health care providers and payers of what could and should be done to avoid the long-term disability currently associated with chronic schizophrenia.
It appears that the NIMH oversight for RAISE falls on Robert Heinssen, Ph.D. [see back in the fold…]:
NIMH Science News
April 23, 2014

The National Institute of Mental Health [NIMH] congratulates Robert Heinssen, Ph.D., recipient of the 2014 Special Presidential Commendation from the American Psychiatric Association [APA]. Dr. Heinssen serves as Director of the Division of Services and Intervention Research at NIMH. He has been recognized by the APA for championing research on early psychosis and translating it into policy and programs for clinical implementation as a new standard of care. The Special Presidential Commendation ceremony is part of the APA Annual Meeting in New York, with the presentation to Dr. Heinssen taking place at the Convocation of Distinguished Fellows on May 5, 2014.

Dr. Heinssen has played a key role in the development of the NIMH research project, Recovery After an Initial Schizophrenia Episode [RAISE]. This groundbreaking project seeks to fundamentally change the trajectory and prognosis of schizophrenia through coordinated and aggressive treatment in the earliest stages of illness. RAISE is designed to reduce the likelihood of long-term disability that people with schizophrenia often experience. It aims to help people with the disorder lead productive, independent lives. At the same time, it aims to reduce the financial impact on the public systems often tapped to pay for the care of people with schizophrenia.

Learn more about the RAISE project as well as the two NIMH-funded research teams that have developed interventions that can be tested in real-world treatment settings and be readily adopted and quickly put into practice. Dr. Lisa Dixon of Columbia University developed the RAISE Connection Program [Wayback Machine] and Dr. John Kane of the Feinstein Institute for Medical Research has developed the RAISE Early Treatment Program.
The NIH/NIMH has been obsessed with the notion of Translational Medicine, a concept that essentially means focusing research on projects that can be moved quickly into the clinical arena. When I say obsessed, I’m not speaking frivolously. There are funded Translation Centers all over the place – it’s a "bench to bedside" world these days. The problem in psychiatry has been that we’re all dressed up to translate, but there haven’t been any great breakthroughs in neuroscience or psychopharmacology to translate – thus the tone of excitement in Dr. Insel’s blog post [From Research to Practice] about putting the RAISE Project into action. And they’ve obviously gone full bore with the SAMHSA Block Grant program and a heavily thought through implementation strategy [Evidence-Based Treatments for First Episode Psychosis: Components of Coordinated Specialty Care], bolstered with a sea of handbooks, and videos [including a psychopharmacology manual].

The more I read about RAISE, the more comfortable I am that it has been thought through, but I’m still bothered by the fact that we’re not privy to that thinking. It’s five years old and has basically lead to the roll out of a major, multi-State initiative with lots of bells and whistles. Yet, so far, all I can find are upbeat press releases and general descriptions. If it’s moving this fast, we ought to have some access to the details of the program and at least some of the data that has them moving so quickly. I have no doubt that any such team approach with a large psychosocial component is a good idea and will help First Psychotic Episode patients. But what I can’t see so far is that there’s anything that’s specifically tailored to the target population. There’s nothing generic about the cognitive and emotional challenges for these patients [and the people who work with them]. Schizophrenia is a unique illness and any program that intends to take it on needs to be specifically focused on that illness itself. And don’t know what resiliency training means, or how they propose to have a therapeutic alliance in these notoriously aloof  patients. or how the other components have been adapted for the specific needs of these patients. I’m not saying they haven’t done their homework, but they’ve left the rest of us out of the loop, in the dark. And most of what I’m finding is about staffing and financing – not how they’re proposing to approach a group of patients that have been so baffling throughout history…
  1.  
    May 16, 2014 | 10:12 PM
     

    I’m very impressed by your use of the Wayback Machine.

  2.  
    Arby
    May 16, 2014 | 10:22 PM
     

    I am not sure I understand what you are looking for, yet I found the following. If not what you are interested in, please ignore.

    Evidence Based Treatments for First Episode Psychosis

    Many links in the above document including this one:

    OnTrackUSA

    Also, ditto on Altostrata’s comment on the use of the Wayback Machine

  3.  
    Arby
    May 16, 2014 | 10:24 PM
     

    Ok never mind; I missed your link above on first pass. You’ve already found what I did.

  4.  
    adam
    May 17, 2014 | 7:07 AM
     

    i went to a very impressive seminar given by Jaakko Seikkula, a Finnish psychologist who has been developing what he calls the open dialogue approach for over two decades. As the talk progressed, it felt more and more like I was seeing a vision of some sort of utopian vision of the future, a future in which equal parts of common sense, clinical experience and empathy informed treatment.

    Resources are incomparably better in Finland than most other places in the world (they four times the worker to patient ratio that Australia has, for instance). I guess that alone would make a big difference. Even given the resources, it really felt like what they were doing was something very promising. This is a pretty substantial program that has run for a fair amount of time now, and the results, in terms of high employment levels, low-medication rates, numbers in full recovery etc. were almost unbelievably impressive.

    One of the points that Jaako continually stressed was that very early intervention was absolutely essential to recovery. The community has been educated to understand that they need to contact the mental health unit as soon as any psychosis is evident. They have an emergency response team that responds to calls within 24 hours, and this team stays with the case throughout the entire course of treatment. In addition, every significant person in the patients life is brought together in a series of meetings, in which both past experiences and future treatment is openly discussed (I told you it sounded utopian).

  5.  
    May 17, 2014 | 8:59 AM
     

    Hi Adam,
    I have been studying Open Dialogue for the past two years. While it remains to be seen whether their outcomes can be replicated elsewhere, their way of working with people and structuring their system is indeed remarkably humane. There is nothing antithetical to our more empirically based approaches that precludes us from integrating at least parts of this and that is what I and some others have been trying to to. There are related approaches used in Norway(reflecting therapies) and Sweden (Family Care foundation) that people have been working on for decades. Having some familiarity with both RAISE and these other approaches, I am inclined to continue to study the latter. However, anything can be pulled in. CBT, dynamic therapies, drug treatments, etc. can all be used. It is as much about the structure of your system and one’s attitude when meeting people in distress as anything else (although I am mindful than I am not an expert, just a student, so please read this in that context).
    Here are some links for more information:
    http://www.madinamerica.com/2012/09/five-nights-in-finland/
    http://www.madinamerica.com/2012/09/finland-the-pre-seminar/
    http://www.madinamerica.com/2012/09/more-from-finland/
    Regarding the benefits of early intervention, there is universal agreement on this, however, in Finland (and a few other places) early intervention is not synonymous with drugs.
    For more on this:
    http://www.madinamerica.com/2013/04/optimla-use-of-neuroleptics-part-3-duration-of-untreated-psychosis/

  6.  
    berit bryn jensen
    May 19, 2014 | 6:38 AM
     

    Norwegian mental health organizations for patients, survivors, family members are cooperating to obtain mental health services and treatments that are medication-free. Around 2009 the Ministery of Health, then led by our last labour government, instructed every hospital to plan and offer medication-free treatment. But psychiatrists here are trained in the standard approaches, with all the well-known iatrogenic concequences of psychopharmaca. Most biologically trained doctors/psychiatrists take their cues from the top brass of the medical guild and at “their” respective clinics. Progress is an uphill struggle. But We Shall Overcome, some day…

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