Meeting Summary (Outreach)

Alliance for Research Progress — February 10, 2012 Meeting

February 10, 2012
Rockville, Maryland

OVERVIEW

The National Institute of Mental Health (NIMH) convened its sixteenth meeting of the Alliance for Research Progress (Alliance) on Friday, February 10, 2012 in Rockville, Maryland; this document provides an overview of the proceedings. At Alliance meetings, participants have the opportunity to hear about exciting new research and advances in fields related to mental health and mental illness, to network with colleagues, and to interact directly with NIMH director, Thomas Insel, M.D., and senior NIMH staff. Invitees, who include leaders from national organizations representing patients and their families, hear about major projects and activities at the National Institutes of Health (NIH) and NIMH. At this sixteenth meeting, there were presentations and lively discussion about several exciting areas, including: using neuroscience to discover new treatments for pediatric anxiety; the new Patient-Centered Outcomes Research Institute (PCORI) created by the Patient Protection and Affordable Care Act; cognitive training to intervene in early psychosis; a New York Times series on people who are living full lives despite mental illnesses; and, how patient registries can achieve positive outcomes through social networking and data sharing. For more information on the speakers, please see the attached agenda and participant list.

MAJOR THEMES

State of the NIMH

Dr. Insel opened the meeting by highlighting some extraordinary current opportunities in several areas including investing in basic research, using technology to accelerate discovery, advancing translational science, and moving science to services. Dr. Insel called 2011 “The Year of Complexity,” and discussed the breakthroughs that have produced huge reductions in costs—while greatly increasing the speed of genome sequencing—thereby fostering new understandings of the biology of DNA and RNA. Next, he turned to the Human Connectome Project, which is using innovative technologies to understand the wiring of brain cells and the effects of mis-wiring on brain disorders. Dr. Insel called iPS cells (induced pluripotent stem cells) the transforming technology for mental disorders. Different human cell types can be cultured and grown from iPS cells, allowing them to be used to screen for effective medications: the ultimate in personalization. As Dr. Insel said, “You can rerun development and you can do it in a dish.” He mentioned that the pharmaceutical industry is withdrawing from research on therapies targeting the central nervous system, and that new medical interventions are crucial. To help, NIMH is developing a new system of nosology of illness for research purposes, the Research Domain Criteria (RDoC) project. However, RDoC is not intended for use in clinical practice at this time.

Dr. Insel then described how a new NIH institute, the National Center for Advancing Translational Sciences (NCATS), is reengineering the pipeline for treatment development. Established by Congress last year, NCATS will have many functions, including exploration of new uses for abandoned and approved therapeutics, to “repurpose” an estimated 4000 compounds and test them against other illnesses. Dr. Insel also highlighted how some of NIMH’s largest investments are focused on moving science to service: the Army Study to Assess Risk and Resilience in Servicemembers (Army STARRS) is aiming to develop a “risk calculator” to reduce suicide in the army, while the Recovery After an Initial Schizophrenia Episode (RAISE) project, which has 34 sites across the country, is putting together a toolbox of treatments for first episodes of psychosis to improve outcomes. Dr. Insel also talked about NIMH’s role in the National Action Alliance for Suicide Prevention. He closed by quoting Will Durant, who said, “The health of nations is more important than the wealth of nations.” Dr. Insel reminded attendees that mental illnesses are the most economically devastating for countries at every income level.

Pediatric Anxiety: Using Neuroscience to Discover New Treatments

Daniel Pine, M.D., Chief of the Section on Development and Affective Neuroscience and Chief of the Emotion and Development Branch in the Mood and Anxiety Disorders Program, in the NIMH Division of Intramural Research Programs, talked about his research on individual differences in anxious behavior, anxiety and development. He described anxiety as a “gateway” condition and said that it is critical to tell the difference between normal anxious behavior and the beginning of a problem. Anxiety is very common and normal; overcoming anxiety is a part of development. However, the minority of kids who cannot overcome fears will be the majority of adults with psychopathology issues. He said that significant individual differences affect anxiety: “It's not that patients are good at learning how to be afraid, it's that they're bad about learning how to be safe.” Healthy kids and adults engage the prefrontal cortex to distinguish between scary and safe events, but anxious children have a more rapidly deployed threat response. Although researchers have developed computer programs to train people to shift attention from threats, Dr. Pine questioned the appropriateness of such therapies. He is collaborating with 15 research groups around the world to test techniques that show great promise in treating anxiety disorders. In closing he stated that “The answers concerning normal and abnormal behavior are in the brain; generating new treatments is the scientific payoff.”

The Patient-Centered Outcomes Research Institute (PCORI)

Grayson Norquist, M.D., M.S.P.H., Chairman of the Department of Psychiatry and Human Behavior at the University of Mississippi Medical Center, is one of 21 members of the Board of Governors of the Patient-Centered Outcomes Research Institute (PCORI). PCORI was created as an independent, non-profit organization in Patient Protection and Affordable Care Act of 2010 (Public Law 111-148). The unique role for PCORI is to develop data for informed healthcare decisions. As Dr. Norquist noted, “We have better information right now about how to buy a washing machine than we do about how to make our own personal health care decisions.” PCORI is funded through small fees on Medicare and other insurance; 20% of the funds are passed through to the Agency for Healthcare Research and Quality for dissemination of evidence-based information. By law, PCORI cannot make recommendations based on costs, but it can foster patient-driven research on healthcare decision-making, with a goal of better decisions leading to better outcomes. Communication and dissemination are essential, as well as attention to disparities, and to improving capacity to conduct research.

PCORI is also charged with developing plain language materials on healthcare decision-making for the public. Draft national priorities and a research agenda have been posted at www.PCORI.org, and public comments are sought through March 15, 2012. It is estimated that a call for proposals for awards will be issued in late spring. PCORI will hold a stakeholder meeting February 27, 2012 at the National Press Club in Washington, D.C. for a public discussion of priorities and agenda, which will be webcast. Dr. Norquist also told the Alliance members that PCORI is trying to build a cadre of public reviewers and invited them to apply.

Neuroscience-Guided Cognitive Training for Early Psychosis

Rachel Loewy, Ph.D., Assistant Professor in the Department of Psychiatry at the University of California, San Francisco discussed her research on neuroplasticity-based cognitive training in schizophrenia that has resulted in improved cognitive performance in teenagers and young adults who have recently developed schizophrenia. She also presented data on similarly promising results with young people showing subtle clinical signs of risk for schizophrenia, who often have multiple cognitive deficits. She explained that where there are early signs, if people can be reached before an episode, certainly before multiple disabling episodes, the progressive brain changes observed as a person proceeds into psychosis may be avoided. Dr. Loewy said, “These neuroplasticity-based exercises can make cognitive change in schizophrenia patients. It predicts real world functioning six months later, and we're seeing similar patterns in both younger patients who have developed schizophrenia, as well as those at risk for it.” Dr. Loewy suggested that targeted cognitive training be the first treatment for cognition deficits in psychosis.

Mental Health and the Media

Benedict Carey, Science Reporter for the New York Times, told Alliance members about his five-part series on people who function well with serious mental illnesses (SMI) entitled, “Lives Restored” (http://www.nytimes.com/interactive/science/lives-restored-series.htmlExternal Link: Please review our disclaimer.). Mr. Carey’s “beat” is brain and behavior, which he indicated is a shrinking area of specialty among reporters, so his focus in this area has become more essential. He said that serious mental illnesses are “a mystery for most people.” He talked to many experts, and during the series asked the participants questions: How do you come to terms with your diagnosis? How do you care for yourself? How do you understand yourself and others? The mature, middle-aged people in this series had a story to tell, living full lives, with jobs and relationships. Mr. Carey showed videos of the stories to the Alliance members, who were keen to talk about them. In the end, he said he felt like less of an outsider with regard to the plight of families and individuals living with SMI. He doesn’t have the answer, but he has an answer: here are some examples of people with awful problems that they have overcome. In closing, Mr. Carey said that he felt fortunate to have met the individuals in the series and to have had the opportunity to attend the Alliance meeting.

Health Registries

James Heywood, Chairman and Co-Founder of PatientsLikeMe, Inc. (www.patientslikeme.comExternal Link: Please review our disclaimer.) talked with Alliance members about how to use social networking to help patients manage their healthcare. He discussed his brother’s diagnosis of amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, and said that he initially created PatientsLikeMe for ALS patients to share information about their symptoms and treatment. Mr. Heywood demonstrated the registry, which is made up of patient reported data. Using the data, it is possible to discover medication interactions and side effects like weight gain and to track measures of physician quality and performance. He said there is a “dose response curve,” the more friends you have in PatientsLikeMe, the better your health outcomes. Moreover, PatientsLikeMe is designed to track well-being over time, something which doesn’t normally happen in medical practice. He explained that the registry allows prediction of an individual’s course from his or her own data, assessed against other patients with the same disease. It is possible to test hypotheses every day. Mr. Heywood said that the stakes are high, and that we don’t know what disease is, we don’t know what health is, and we are not generating data systems to find out. PatientsLikeMe is an open registry, and he encouraged any non-profit organization to recruit and host a registry focused on their constituency.

DISCUSSION

During the discussion period, Alliance members had the opportunity to direct comments and questions to the NIMH Director, and to engage the presenters in lively dialogue. Dr. Insel’s presentation about new research on the genome elicited a number of questions about DNA and RNA. Attendees were also firm in their request for the new Diagnostic and Statistical Manual of Mental Disorders (DSM-V) to reflect the latest research. Dr. Insel’s comments about health economics led one Alliance member to remark that the mental health of a nation directly affects global competitiveness. There were questions focused on the practical need to get children to practice cognitive training techniques. Dr. Pine and Dr. Loewy offered realistic suggestions from their experience. Dr. Insel suggested that if kids with anxiety can be successfully treated, it might be possible to impact the overall burden of adult mental illness.

The presentation on PCORI stimulated a number of comments. One Alliance member said that it could provide a unique leadership role in the study of premature death in people with mental disorders, a public health emergency. To assure that studies are community-based and patient-driven, Dr. Norquist urged Alliance members to apply for grants and noted that academic partners are not required. For example, PCORI is looking for proposals to test integrated models for children. PCORI is striving to explain eligibility, which is broad. Priority setting will largely be led by comments and suggestions provided by members of the public. Dr. Norquist was asked about success measures; he said that, although they were not settled yet, PCORI members want to avoid being too directive, thereby allowing for a broad range of research.

Regarding brain training discussed by Drs. Pine and Loewy, the questions led the speakers to remark that the impact of the environment is underestimated, and that resiliency and capacity must be built. Dr. Insel mentioned that much of our science has been conducted to observe group distinctions. Treatments must take advantage of specific personal abilities, biology, and deficits toward the most useful outcome for an individual. However, Alliance members questioned how this would be reimbursed in our current healthcare model. A member suggested that since the Department of Labor reports unemployment for people with SMI hovering around 75-80%, vocational training programs for people with schizophrenia that utilize cognitive training software could be a source of funding. One attendee said that this training was, “one of the most exciting things I’ve heard for some time,” and that “parents will be most enthusiastic,” especially since antipsychotic medications have not been shown to be preventive.

Following Mr. Carey’s presentation, an Alliance member noted that people with mental illnesses like depression, for example, are often depicted in advertising as incompletely healed often in black and white with sad music. Participants called on Mr. Carey to continue his efforts and to portray people with SMI more positively for stigma reduction. One participant called people with schizophrenia “Heroes of Hope” with the same goals and values as everyone else.

There were many questions for Jamie Heywood concerning how to customize the registry data and reports, keeping people actively engaged in entering data, and maintaining funding. In response to a question about funding, Mr. Heywood said he is primarily funded by the pharmaceutical industry, which is interested in, and will pay for, outcome data. Possible biases in the data were questioned due to the limitations on the patients that the questioner assumed to be primarily upper-class, white, and English-speaking and health-seeking. Mr. Heywood said that he expects time and awareness will increase the diversity of participation in the registry.

PHOTOGRAPHS

View additional images from the meeting on the NIMH Flickr photo stream at http://www.flickr.com/photos/nimhgov/sets/72157629323421716/External Link: Please review our disclaimer..