Alliance for Research Progress - February 8, 2013 Meeting
Alliance Report - February 2013
The National Institute of Mental Health (NIMH) convened its eighteenth meeting of the NIMH Alliance for Research Progress (Alliance) on Friday, February 8, 2013 in Rockville, MD; this document provides an overview of the proceedings. At Alliance meetings, leaders from national organizations representing persons with mental illness and their families hear about major projects and activities at the National Institutes of Health (NIH) as well as at NIMH. They also hear about and discuss advances in mental health and mental illness research, network with colleagues, and interact directly with NIMH director, Thomas Insel, M.D., and senior NIMH staff. At the February 8 meeting, participants heard about accelerating cures, catalyzing translational research, implementing evidence-based psychotherapies in the U.S. Department of Veterans’ Affairs (VA), and building the agenda for mental health parity. NIMH staff also solicited public comment on a research concept entitled “Reducing Duration of Untreated Psychosis in the United States,” which was approved by participants. For more information on the speakers, please see the attached agenda and participant list.
State of the NIMH: The view from 2013
Dr. Insel’s presentation focused on three issues for discussion: (1) untreated psychosis, (2) suicide, and (3) comorbidity and reduced longevity in persons with serious mental illness. The Mental Health Parity and Addiction Equity Act, the law mandating parity health care coverage for mental illness, along with the Patient Protection and Affordable Care Act, are crucial for all three issues. Dr. Insel began by calling attention to the speech President Kennedy made 50 years ago to Congress in which he said, “We as a Nation have long neglected the mentally ill and the mentally retarded. This neglect must end, if our nation is to live up to its own standards of compassion and dignity and achieve the maximum use of its manpower.” He stated that some of our most critical public health problems involve people with untreated psychosis and discussed recent tragedies and increased public and political interest in mental illness. Dr. Insel highlighted President Obama’s Executive Order aimed at reducing gun violence , which includes reinstating Federal research to examine gun violence as a public health issue, as well as a National Dialogue on Mental Health, led by the Substance Abuse and Mental Health Services Administration (SAMHSA), to address negative attitudes toward mental illness and its treatment. He also described a number of recent congressional events focused on serious mental illness and violence. Dr. Insel told participants that research shows that people with mental illness who are receiving treatment are no more violent than people without mental illness, but people with untreated psychosis may be at greater risk for violence, particularly if they also abuse substances.
Dr. Insel explained that violence in persons with untreated serious mental illness most often turns inward; suicide is a far-too-frequent result of untreated psychosis. There are now approximately 38,000 suicides a year—more than twice the annual number of homicides. He noted that more research is needed to understand how to prevent the growing number of suicides. Many States are developing policies that are well-intended, but it is feared that some may adversely impact public safety and personal privacy. Progress may depend on reducing exposure to violence and treating early stages of psychosis. Dr. Insel also discussed the rising number of suicides in the military and NIMH’s partnership with the Army through the Army Study to Assess Risk and Resilience in Service-members (Army STARRS), and how Army STARRS research might be applied to the President’s Executive Order on “Improving access to mental health services for veterans, service members, and military families .”
With regard to comorbidity and reduced longevity, Dr. Insel noted that health outcomes for people with mental illnesses can be poor. NIMH supports a number of initiatives to address this issue, including the North American Prodrome Longitudinal Study, Recovery After an Initial Schizophrenia Episode, ArmySTARRS, and Fast-Fail trials. NIMH is supporting the FAST initiative to provide a rapid way to test new or repurposed compounds for their potential as psychiatric medications not only to quickly identify compounds that merit more extensive testing, but also to identify targets in the brain for the development of additional candidate compounds. Even though many pharmaceutical companies have withdrawn from developing psychiatric medications, NIMH is seeking to keep industry engaged.
Following Dr. Insel’s presentation, Alliance participants shared their views and concerns about recent events, including the increased focus on mental illness and violence in response to recent tragedies in the U.S. Participants discussed the challenges and importance of reaching out to parents to educate them about mental illnesses, which are brain disorders; providing them guidance related to access to care; and, preparing them for issues related to stigma and discrimination. Participants called for a school-based system to provide early interventions to children and discussed the confusion about the Family Educational Rights and Privacy Act (FERPA) and The Health Insurance Portability and Accountability Act of 1996 (HIPAA) Privacy and Security Rules—which participants felt can be used as an excuse to do nothing or keep teachers from seeking advice from psychologists.
Kana Enomoto, Principal Deputy Administrator of SAMHSA described “Project AWARE,” the President’s initiative to increase mental health literacy in schools and among youth and families; support people in crisis; create clear pathways to care; and reduce negative attitudes. She also discussed progress in planning the National Dialogue on Mental Health, which seeks to engage communities in conversation; develop and distribute a discussion guide that contains scientific facts about mental illnesses and substance abuse; and, improve the flow of people from referral to treatment. Participants also expressed concern about the threatened sequestration set to take effect on March 1, and what those budget cuts would mean for NIMH.
The Evolving Role of Patients in the Research and Development Ecosystem
Margaret Anderson, M.S., the Executive Director of FasterCures (fastercures.org)/The Center for Accelerating Medical Solutions discussed how her organization works to improve and accelerate medical research, thereby reducing the time it takes for important new medicines to travel from discovery to patients. She told participants about the evolving role of patients in the research and development ecosystem, discussed how delays in research “literally equals lives [lost],” and that collaboration is key to progress. FasterCures promotes partnering for cures and is patient-centered. The organization has modeled its efforts after those of HIV/AIDS activists, interviewing activists about their methods. Activists advised FasterCures “to get very smart about the science” in order to get a seat at the table: “In order to effect change you actually have to understand everything that needs to be changed,” from programmatic restraints to stigma. Ms. Anderson described what she called ‘venture philanthropy:’ “This is milestone-driven research, and we want to work with you on what those milestones are.” She also identified other activities that foster collective goals on which the Alliance could be marching forward.
Participants discussed the use of mainstream media, including film, as a way to educate the public and emulate aspects of the HIV/AIDS model of mobilizing and creating power. Specific references were made to the movie Silver Linings Playbook, and how it could be an effective educational resource if it included resource information for the public when it is re-packaged for DVD distribution. Former Congressman Patrick Kennedy noted that, like FasterCures, the mental health advocacy community could overcome their own separate agendas and partner to develop a roadmap, networks, and data for a single overarching agenda.
Catalyzing Translational Innovation
Christopher Austin, M.D., Director of the NIH National Center for Advancing Translational Sciences (NCATS ) told Alliance members that he is amazed at the number of people who think there is no problem with our health care system, “when there are about 7,000 diseases that affect the human family, and only about 500 of them have any treatment.” He explained that NCATS was designed to overcome the silos of the current research system, and to be a link among all the NIH Institutes and Centers. The Center will be a catalyst, focusing on tangible deliverables to improve human health and make research “better, faster, cheaper.” NCATS has three main programs: Clinical and Translational Science Awards (CTSA ), Office of Rare Diseases, and reengineering translational science. To speed translation, NCATS has created a pipeline with 300 collaborations. These collaborations allow scientists around the world to bring their difficult problems to the NIH intramural program to get the expertise or the capacity they lack. One achievement of the collaboration has been the compilation of a complete list of all clinically approved drugs to facilitate repurposing and chemical genomics. He said that within 16 months, NCATS was “able to develop four new uses for drugs.” A number of these new efforts were initiated by patient advocacy groups. To hasten treatments for rare diseases, $10 million was included in the Affordable Care Act. The Cures Acceleration Network (CAN )—also in NCATS—is addressing bottlenecks and responding to the needs of researchers. The Discovering New Therapeutic Uses For Existing Molecules Program has already resulted in 58 compounds from eight companies.
In response to a question from a participant regarding collaborations with industry, Dr. Austin replied that there is a commercialization plan in place, like that at The Defense Advanced Research Projects Agency (DARPA), and each program will only be considered a success if the technologies are picked up and commercialized. Regulators have been involved from the beginning. Another participant asked about intentions to include pregnant women and perinatal mood disorders. Dr. Austin said that pregnant women and children are neglected populations, and the CTSA consortium is working to minimize risk and expand testing in these groups. Participants stressed the importance of working with pediatricians on medical comorbidities.
Bridging the Great Divide: National Dissemination of Evidence-Based Psychotherapies (EBP) in the Department of Veterans Affairs
Bradley Karlin, Ph.D., National Mental Health Director of Psychotherapy and Psychogeriatric Mental Health Services at the U.S. Department of Veterans Affairs (VA) discussed efforts to implement EBPs in the VA health care system. Dr. Karlin said there is a duality of crisis and opportunity in mental health care today. While there has been unprecedented scientific progress, it has remained largely in the laboratory. EBPs are delivered at very low rates in the U.S. and abroad. Significant problems include lack of provider training and organizational support. The VA has a multi-level dissemination and implementation model for the national policy requiring the availability of EBPs. Dr. Karlin said that of the 7.8 million veterans enrolled for VA health care, 6.2 million were seen in fiscal year 2011, and 25% received specialized mental health services. Over 6,400 VA staff members have received training in one or more EBPs, and there is a coordinator in each medical center. The first two therapies focused on were interventions geared toward post-traumatic stress disorder (PTSD) and depression. Key remaining questions include: can busy clinicians be trained to deliver EBPs with competency and fidelity; how will veterans view EBPs and will they remain in therapy; and how effective are EBPs outside of the laboratory with real-world patients? To demonstrate results, the VA has built evaluation questions into training and treatment. Dr. Karlin shared promising early outcome data from the program evaluation. He also introduced “PTSD coach”: a mobile tele-mental health app which enables people with PTSD to monitor symptoms and learn coping skills. Participants asked who the users of the app are, and what data and demographics are available. The award-winning app has been downloaded in 45-50 countries and received high ratings. The VA now has in development for a host of applications for other conditions as “a softer way into therapy” or as an adjunct to therapy.
During the discussion periods, Dr. Insel asked about analyzing the costs to demonstrate savings. Dr. Karlin said there have been a few studies and they are now beginning to use electronic medical records to show significant cost savings. Mr. Kennedy asked how the VA could become a model for the civilian care system and if primary caregivers deliver EBPs. Dr. Karlin said that the VA has been integrating mental health providers into the primary care setting to improve access, as well embedding mental health providers into interdisciplinary teams. Participants also inquired how these types of trainings have been integrated into the care-model and issues related to case overload, residents delivering care, and the lack of outreach to shelters. Dr. Karlin said an increase in funding has allowed these issues to be addressed. Dr. Insel called the VA’s activities historic and critical: “There is a chance here to really raise the bar on the quality of what is provided…and then we will really have parity.”
Building an Agenda for Parity in Both Research and Health Care Reform Implementation
The Honorable Patrick Kennedy, former U.S. Congressman and Co-founder, One Mind for Research, called access to good treatment for people with mental illnesses “a civil rights issue.” He said Americans have an opportunity to make a statement to the world about how we will finally work toward fulfilling the promise expressed 50 years ago by his uncle, President John F. Kennedy. Mr. Kennedy challenged participants to consider how best to use all the information shared at the meeting to develop and advance a common mental health plan. He said that in the wake of recent tragedies, such as the Newtown, CT shooting, politicians (and all Americans) are seeking consensus to develop an agenda—and it is important to synthesize what is in the combined interest and think strategically about what to do. He called for universal screening: “the check up from the neck up.” Once everyone is on the same system, our challenge will be to define health and wellness and to monitor it across the country. He said that we need a map showing status of mental health in the States. Furthermore, supportive living, employment, and access to housing must be studied for their role in medical success. Mr. Kennedy suggested that the White House conduct a conference on mental health to be webcast across the country, but said that if groups like the Alliance want Presidential leadership, they first need to be united in their goals.
Participants were enthusiastic about Mr. Kennedy’s call to action for consensus, and openly shared their concerns on the need for standards to assess the delivery of EBPs, disparities in access, quality of mental health care provided, and transparency and communication among government agencies. Mr. Kennedy said that many groups are doing their own national surveys, when instead they should be joining together to influence change. He encouraged participants to attend a meeting at the Kennedy Library October 23-24 as a good first step to begin that process.
View additional images from the 2013 Alliance for Research Progress Winter Meeting on the NIMH Flickr photo stream at http://www.flickr.com/photos/nimhgov/sets/72157633272390407
Alliance Speaker - Margaret Anderson, M.S., Executive Director of FasterCures/ The Center for Accelerating Medical Solutions
Alliance speaker - The Honorable Patrick Kennedy, Former U.S. Congressman and Co-founder of One Mind for Research
Alliance speakers (L to R) Thomas Insel, MD; Margaret Anderson, MS; Christopher Austin, MD; The Honorable Patrick Kennedy; Bradley Karlin, Ph.D.
Alliance members commenting on presentations
Kana Enomoto, Principal Deputy Administrator of SAMHSA responding to questions
NIMH Alliance for Research Progress