{"id":46267,"date":"2014-05-16T20:55:34","date_gmt":"2014-05-17T00:55:34","guid":{"rendered":"http:\/\/1boringoldman.com\/?p=46267"},"modified":"2014-05-16T20:58:29","modified_gmt":"2014-05-17T00:58:29","slug":"out-of-the-loop","status":"publish","type":"post","link":"https:\/\/1boringoldman.com\/index.php\/2014\/05\/16\/out-of-the-loop\/","title":{"rendered":"out of the loop&#8230;"},"content":{"rendered":"\n<p align=\"justify\" class=\"small\">I realize that nosing around the NIMH <em>RAISE<\/em> Project is a little different than many of the things I write about here. Usually, I&#8217;m rooting around looking for corruption peeking out from behind the spin. But here, I&#8217;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&#8217;ve been overutilized and are no long term solution. And I&#8217;m sure that the place to to start is early &#8211; before the psychosis erupts if possible, but certainly as soon as it shows its head. I had such a case [<a target=\"_blank\" href=\"http:\/\/1boringoldman.com\/index.php\/2011\/08\/22\/1-from-n-equals-one\/\">1. <em>from n equals one<\/em>&hellip;<\/a>], and I&#8217;m convinced that the course of the illness can be altered. But, thus far, no one has been able to construct a viable&nbsp; program that endures. There are all kinds of initiatives around the world trying right now &#8211; notably Dr. McGorry&#8217;s program in Australia [which gets mixed reviews]. <em>RAISE<\/em> is apparently our current shot, and I want it to be more than simply another <em>well-intentioned-but-likely-to-fizzle<\/em> program going large prematurely.<\/p>\n<div align=\"justify\" class=\"small\">I found things that explain some of what was going on with <em>RAISE<\/em> by looking at some old NIMH News releases, but the cost accounting and the details of how it all happened still elude me:<\/div>\n<blockquote>\n<div align=\"center\" class=\"big\"><a href=\"http:\/\/www.nimh.nih.gov\/news\/science-news\/2009\/major-nimh-research-project-to-test-approaches-to-altering-the-course-of-schizophrenia.shtml\" target=\"_blank\">Recovery Act Funds Will Support First Phase of Project<\/a><\/div>\n<div align=\"center\" class=\"middle\"><strong><font color=\"#200020\">NIMH Science News<\/font><\/strong><\/div>\n<div align=\"center\" class=\"small\">July 21, 2009<\/div>\n<p align=\"justify\">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 <a title=\"\" href=\"http:\/\/www.nimh.nih.gov\/health\/topics\/schizophrenia\/raise\/index.shtml\">Recovery After an Initial Schizophrenia Episode<\/a> [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&#8230;<\/p>\n<p align=\"justify\">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&#8230;  <\/p>\n<div align=\"justify\">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&#8230;<\/div>\n<\/blockquote>\n<div align=\"justify\" class=\"small\">And this next release clarifies some of what was bothering me earlier [<a href=\"http:\/\/1boringoldman.com\/index.php\/2014\/05\/12\/a-fabrication\/\" target=\"_blank\">a fabrication?&hellip;<\/a>, <a href=\"http:\/\/1boringoldman.com\/index.php\/2014\/05\/14\/where-did-it-go-2\/\">where&rsquo;s the beef?&hellip;<\/a>]. You&#8217;ll notice that the <strong><font color=\"#200020\"><em>RAISE Connection<\/em><\/font><\/strong> links [in <strong><font color=\"#800000\">red<\/font><\/strong>] don&#8217;t work. That site has been taken down. But through the wonders of the <a target=\"_blank\" href=\"http:\/\/web.archive.org\/web\/20110117023803\/http:\/\/www.connectionprogram.org\/?\">Wayback Machine<\/a>, 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:<\/div>\n<blockquote>\n<div align=\"center\" class=\"big\"><a target=\"_blank\" href=\"http:\/\/www.nimh.nih.gov\/news\/science-news\/2011\/nimh-raise-project-makes-progress-as-teams-refine-research-approaches.shtml\">NIMH RAISE Project Makes Progress as Teams Refine Research Approaches<\/a><\/div>\n<div align=\"center\" class=\"middle\"><strong><font color=\"#200020\">NIMH Science News<\/font><\/strong><\/div>\n<div align=\"center\" class=\"small\">August 9, 2011 <\/div>\n<p>        <\/p>\n<div align=\"justify\">Researchers continue to make progress in the NIMH <a target=\"_blank\" href=\"http:\/\/www.nimh.nih.gov\/health\/topics\/schizophrenia\/raise\/index.shtml\">Recovery After an Initial Schizophrenia Episode<\/a> [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.<\/div>\n<ul>\n<div align=\"justify\">The <a target=\"_blank\" href=\"http:\/\/www.raiseetp.org\/\">RAISE Early Treatment Program<\/a> [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.<\/div>\n<\/ul>\n<ul>\n<div align=\"justify\"><a target=\"_blank\" href=\"http:\/\/www.connectionprogram.org\/\"><font color=\"#800000\">The RAISE Connection Program<\/font><\/a> [<a target=\"_blank\" href=\"http:\/\/web.archive.org\/web\/20110117023803\/http:\/\/www.connectionprogram.org\/?\">Wayback Machine<\/a>],  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.<\/div>\n<\/ul>\n<div align=\"justify\">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.<\/div>\n<\/blockquote>\n<div class=\"small\">It appears that the NIMH oversight for RAISE falls on Robert Heinssen, Ph.D. [see <a target=\"_blank\" href=\"http:\/\/1boringoldman.com\/index.php\/2014\/05\/08\/back-in-the-fold\/\">back in the fold&hellip;<\/a>]:    <\/div>\n<blockquote>\n<div align=\"center\" class=\"big\"><a target=\"_blank\" href=\"http:\/\/www.nimh.nih.gov\/news\/science-news\/2014\/nimhs-dr-robert-heinssen-receives-special-presidential-commendation-from-apa.shtml\">NIMH&rsquo;s Dr. Robert Heinssen Receives Special Presidential Commendation from APA<\/a><\/div>\n<div align=\"center\" class=\"middle\"><strong><font color=\"#200020\">NIMH Science News<\/font><\/strong><\/div>\n<div align=\"center\" class=\"small\">April 23, 2014<\/div>\n<p align=\"justify\">The National Institute of Mental Health [NIMH] congratulates Robert Heinssen, Ph.D., recipient of the 2014 <em>Special Presidential Commendation<\/em>  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 <em>Special Presidential Commendation<\/em> 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.<\/p>\n<p align=\"justify\">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.<\/p>\n<div align=\"justify\">Learn more about the <a href=\"http:\/\/www.nimh.nih.gov\/health\/topics\/schizophrenia\/raise\/index.shtml\" target=\"_blank\">RAISE project<\/a>  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 <u><a href=\"http:\/\/www.connectionprogram.org\/\" target=\"_blank\"><font color=\"#800000\">RAISE Connection Program<\/font><\/a><\/u> [<a target=\"_blank\" href=\"http:\/\/web.archive.org\/web\/20110117023803\/http:\/\/www.connectionprogram.org\/?\">Wayback Machine<\/a>] and Dr. John Kane of the Feinstein Institute for Medical Research has developed the <a href=\"http:\/\/www.raiseetp.org\" target=\"_blank\">RAISE Early Treatment Program<\/a>.<\/div>\n<\/blockquote>\n<div align=\"justify\" class=\"small\">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&#8217;m not speaking frivolously. There are funded Translation Centers all over the place &#8211; it&#8217;s a &quot;bench to bedside&quot; world these days. The problem in psychiatry has been that we&#8217;re all dressed up to translate, but there haven&#8217;t been any great breakthroughs in neuroscience or psychopharmacology to translate &#8211; thus the tone of excitement in Dr. Insel&#8217;s blog post [<a target=\"_blank\" href=\"http:\/\/www.nimh.nih.gov\/about\/director\/2014\/from-research-to-practice.shtml\">From Research to Practice<\/a>] about putting the RAISE Project into action. And they&#8217;ve obviously gone full bore with the <a target=\"_blank\" href=\"http:\/\/beta.samhsa.gov\/grants\/block-grants\">SAMHSA Block Grant<\/a> program and a heavily thought through implementation strategy [<a target=\"_blank\" href=\"http:\/\/www.nimh.nih.gov\/health\/topics\/schizophrenia\/raise\/summary-of-fep-treament-components-d9-11apr-2014-final-edits-for-briefin.pdf\">Evidence-Based Treatments for First Episode Psychosis: Components of Coordinated Specialty Care<\/a>], bolstered with a sea of handbooks, and videos [including a <a href=\"https:\/\/raiseetp.org\/studymanuals\/Psychopharmacology%20Manual.pdf\" target=\"_blank\">psychopharmacology manual<\/a>].<\/div>\n<p> <\/p>\n<div align=\"justify\" class=\"small\">The more I read about RAISE, the more comfortable I am that it has been thought through, but I&#8217;m still bothered by the fact that we&#8217;re not privy to that thinking. It&#8217;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&#8217;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&#8217;t see so far is that there&#8217;s anything that&#8217;s specifically tailored to the target population. There&#8217;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&#8217;t know what <em>resiliency training<\/em> means, or how they propose to have a therapeutic alliance in these notoriously aloof&nbsp; patients. or how the other components have been adapted for the specific needs of these patients. I&#8217;m not saying they haven&#8217;t done their homework, but they&#8217;ve left the rest of us out of the loop, in the dark. And most of what I&#8217;m finding is about staffing and financing &#8211; not how they&#8217;re proposing to approach a group of patients that have been so baffling throughout history&#8230;<\/div>\n","protected":false},"excerpt":{"rendered":"<p>I realize that nosing around the NIMH RAISE Project is a little different than many of the things I write about here. Usually, I&#8217;m rooting around looking for corruption peeking out from behind the spin. But here, I&#8217;m looking for something else. I want these early psychosis programs to work. A career of seeing what [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_bbp_topic_count":0,"_bbp_reply_count":0,"_bbp_total_topic_count":0,"_bbp_total_reply_count":0,"_bbp_voice_count":0,"_bbp_anonymous_reply_count":0,"_bbp_topic_count_hidden":0,"_bbp_reply_count_hidden":0,"_bbp_forum_subforum_count":0,"footnotes":""},"categories":[2],"tags":[],"class_list":["post-46267","post","type-post","status-publish","format-standard","hentry","category-politics"],"_links":{"self":[{"href":"https:\/\/1boringoldman.com\/index.php\/wp-json\/wp\/v2\/posts\/46267","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/1boringoldman.com\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/1boringoldman.com\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/1boringoldman.com\/index.php\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/1boringoldman.com\/index.php\/wp-json\/wp\/v2\/comments?post=46267"}],"version-history":[{"count":22,"href":"https:\/\/1boringoldman.com\/index.php\/wp-json\/wp\/v2\/posts\/46267\/revisions"}],"predecessor-version":[{"id":46301,"href":"https:\/\/1boringoldman.com\/index.php\/wp-json\/wp\/v2\/posts\/46267\/revisions\/46301"}],"wp:attachment":[{"href":"https:\/\/1boringoldman.com\/index.php\/wp-json\/wp\/v2\/media?parent=46267"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/1boringoldman.com\/index.php\/wp-json\/wp\/v2\/categories?post=46267"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/1boringoldman.com\/index.php\/wp-json\/wp\/v2\/tags?post=46267"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}