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Alliance for Research Progress - July 29, 2011 Meeting

Meeting Summary (Outreach)
Bethesda, Maryland

OVERVIEW

The National Institute of Mental Health (NIMH) convened its fifteenth meeting of the Alliance for Research Progress (Alliance) on Friday, July 29, 2011 in Bethesda, Maryland; this document provides an overview of the proceedings. The Alliance meeting allows participants 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 the NIMH director, Thomas Insel, M.D., and senior NIMH staff. Invitees include leaders from national voluntary organizations representing patients and their families. Participants at Alliance meetings hear presentations on major projects as well as the status of current events affecting the National Institutes of Health (NIH) and NIMH. At this meeting, there were presentations and lively discussion about mental health issues in the media, a study on how to establish a learning mental health care system, strategic approaches to addressing drug discovery challenges, and new initiatives to advance translational research. NIMH staff also presented information on two concept clearances - Integrating Mental Health into Chronic Care Provision in Low- and Middle-Income Countries; and Research to Improve Treatment Engagement for Mental Health Care across Diverse Groups. 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 with his “State of the NIMH” address, highlighting projects and initiatives at the Department of Health and Human Services (HHS), NIH, and NIMH levels. He told Alliance members about a new cross-HHS coordinating committee on behavioral health led by Pamela Hyde, J.D., the Administrator of the Substance Abuse and Mental Health Services Administration (SAMHSA) and Howard Koh, M.D., M.P.H., the Assistant Secretary for Health. The committee is charged with coordinating behavioral health activities across HHS, and has five subcommittees addressing early intervention; prescription drug abuse; teenage drinking; integrating behavioral health care with primary care; and, behavioral health communications. Dr. Insel co-chairs the communications subcommittee, which develops targeted messages and materials on children’s mental health. He also discussed The Interagency Autism Coordinating Committee (IACC) , a federal advisory committee that brings together representatives from relevant federal agencies, researchers, and individuals on the autism spectrum, parents, and others in the autism community. NIMH chairs the committee on behalf of the Secretary of HHS. Dr. Insel also mentioned the work of the National Action Alliance for Suicide Prevention, which is convening stakeholders to advance the National Strategy for Suicide Prevention. At the NIH level, Dr. Insel discussed plans for NIH’s proposed National Center for Advancing Translational Sciences (NCATS), which aims to accelerate the development of new diagnostics and therapeutics across a wide range of diseases. He encouraged Alliance members to provide feedback  online on the proposed center. Dr. Insel also provided an update on the Research Domain Criteria (RDoC) project and the Institute’s efforts to address the need for new interventions and therapies for neurodevelopmental disorders. In closing, Dr. Insel highlighted three projects that target the public health needs and concerns of the mental health community: the Recovery After an Initial Schizophrenia Episode project; the U.S. Army Study to Assess Risk and Resilience in Service-members; and, the Health Maintenance Organization Research Network.

Mental Health Issues in the News: Opportunities and Challenges

Alliance members were happy to dialogue with Julie Rovner, a Health Policy Correspondent for National Public Radio (NPR), specializing in the politics of health care, and a contributing editor for National Journal Daily, a publication focusing on Capitol Hill. She served as NPR's lead correspondent on the passage and implementation of the 2010 healthcare reform bill, the Patient Protection and Affordable Care Act of 2010 (ACA). Ms Rovner engaged Alliance members in a discussion of the current federal funding climate as it relates to health care, and also about interacting with the media to promote awareness of mental health issues. She talked about the debt ceiling debate and the Congressional appropriations process. She told Alliance members that they should anticipate a freeze in discretionary funding for HHS and its programs. She noted that there is great concern about which programs will survive as federal and state budgets are streamlined. Ms. Rovner stated that Medicaid funding should stay in place until 2013, although many states are actively trying to overhaul the legislation. In response to questions from Alliance members about mental health parity and the ACA, Ms. Rovner noted that some health care providers are attempting to require pre-authorization for mental health services—an action that is counterproductive to the ACA—and that a number of providers have interpreted the requirements of the ACA and the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008 in ways that are not beneficial to the mental health community. She mentioned that it often takes years for health care journalists to research and report on stories that draw attention to public health issues. She suggested that advocacy organizations proactively assist the media in becoming aware of mental health issues by posting links to specific information on their web sites, providing contact information for real people who can share real stories, and having a list of resources on hand to facilitate reporters’ research.

Becoming a Learning Mental Health Care System: Transforming Practice into Research

Gregory Simon M.D., M.P.H., Senior Investigator at the Group Health Research Institute and a psychiatrist at Group Health’s Behavioral Health Service, presented information on the Mental Health Research Network (MHRN), a consortium of 10 public-domain research centers affiliated with not-for-profit integrated health systems, with the mission of improving the management of mental health conditions through a closer connection between research, practice, and policy. Dr. Simon noted the challenges of mental health research including the long length of time necessary for discovery, the expense, the narrow focus, and the design structure of mental health research. He described how the MHRN uses a common electronic medical record system and a shared infrastructure for assessment to monitor and analyze data from the network. Through the review of electronic medical records and historic data, and continuous engagement with providers and delivery system leaders, the MHRN provides helpful information on how medical practice can guide future research. Dr. Simon detailed how the MHRN is an example of a “learning” mental health care system and how this system would benefit all stakeholders by improving the efficiency of care. For patients and consumers, the system would allow individuals to monitor and evaluate the effectiveness of the treatment they receive, and to compare their progress and experience with that of other people with the same diagnosis. The system could help providers monitor the progress of their patients and compare treatments to optimal practices employed by colleagues to determine how best to treat their patients’ mental illness, while identifying and systematically addressing priorities for quality improvement in their practice. For health plans and health systems, a “Learning Mental Health Care System” would allow leadership to monitor outcomes methodically for all patients system-wide who start treatment; to identify variation in practice and outcomes; and, to provide real-time tools for implementing quality improvement. In closing, Dr. Simon told Alliance members about the need to protect patient privacy and how such a system could transform the standards and expectations of care for mental illnesses.

Strategic Approaches to Addressing Drug Discovery and Development

Rajesh Ranganathan, Ph.D., Senior Advisor to the NIH Director for Translational Research discussed the challenges facing the pharmaceutical industry as it relates to drug discovery and development. He noted that there has been a no appreciable increase in the number of new drugs approved over the last 15 years. Using graphics of cost and attrition curves, he outlined the typical development process which begins with 10,000 possible compounds, eventually narrowed down to a single new medicine after approximately 14 years of effort and millions of dollars in costs, most of which had been associated with the 9,999 unsuccessful compounds. Dr. Ranganathan talked to Alliance members about ways to impact the development and translation timeline to produce more therapies. One way to impact the timeline is to acknowledge that a particular compound should not be discarded or promoted solely on the outcome of preclinical animal models, as compounds that are ineffective in animals may prove to be efficacious in humans. Additional study of these compounds may increase the number of new drugs developed over time. He also discussed repurposing “shelved" compounds for new targets and performing pathway analysis to better inform how combination approaches can have beneficial outcomes in a spectrum of indications. In closing, Dr. Ranganathan reiterated the following messages as ways to expedite translational research:

  • Target choice and appropriate treatment approach are critical to success;
  • Disease pathway analysis can provide multiple shots on goal;
  • Biomarker development is critical to pursue alongside the development of the therapy;
  • Rare diseases can be entry points to broader markets;
  • Pathway analysis is an important step in finding the right treatments for the right patients; and,
  • Multidisciplinary teamwork is critical to success in therapeutic development.

The NIH Neurobiobank: A Partnership to Advance Translational Research

Roger Little, Ph.D., Senior Policy Advisor for Science Coordination in the NIMH Office of Science, Policy, Planning, and Communications, told Alliance members about the NIH Neurobiobank, a new multi-Institute project focusing on the collection of biological specimens in a central repository. He provided background information on the need and potential benefits. The project is in a preliminary planning phase. Dr. Little discussed the results of a process that included an NIH portfolio analysis, input from biobanking experts, a review of the literature, and a Request for Information that identified several goals for the project: to increase the number of both healthy and rare disease donors through partnership with patient advocacy groups; to increase the quantity and quality of tissue samples through the implementation of standard operating procedures and quality management practices; to ensure the ethical collection of tissues; and, to ensure high quality clinical and phenotype data through the use of standard practices and measures. In addition, a central information technology infrastructure will increase awareness about the importance of human tissue research; improve investigator access to tissue samples; standardize the collection of patient data, consent forms, and material transfer agreements; and, allow data generated from donated tissues to be returned to a public access database. Dr. Little highlighted why human tissue donations are needed to study psychiatric disorders: psychiatric disorders are caused by de novo mutations and very rare genetic variants; there are different phenotypes in different individuals with same genetic variant; and, the use of animal models with human alleles does not completely reproduce human phenotypes. In response to his presentation, Alliance members engaged Dr. Little in a dialogue about how best they could contribute to the project, the timeline, and patient privacy.

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. The topics ranged widely, from the Institute’s ongoing efforts in the area of suicide prevention, to NIH advances in the area of epigenetics. Dr. Insel fielded most questions and comments, but many of the inquiries were directed at the guest speakers. Ms. Rovner responded to questions about the governing experience of freshmen members of Congress and the political power struggle in Washington that has drastically slowed the legislative process. She also responded to inquiries about how to encourage the interests of health and science journalists in brain disorder research and personal stories. In response to questions about provider accountability, Dr. Simon mentioned that financial incentives could be given to providers to encourage them to do more to ensure patient compliance to treatment regimens that have positive outcomes. In addition, incentives can be given to providers who score high on patient satisfaction surveys. Dr. Simon noted that the use of the satisfaction survey is also a way to encourage the patient to provide feedback to the provider on the care received. Dr. Ranganathan discussed the benefits of pathway analysis as it relates to developing personalized treatment. He too recommended the use of patient satisfaction surveys to monitor patient’s adherence to new “personalized” therapies and the possibility of cash back incentives from pharmaceutical companies when the therapy does not produce favorable outcomes. Dr. Little responded to questions and comments on how Alliance members could support and promote the efforts of the Neurobiobank among their constituents, and staff from the NIMH Office for Research on Disparities and Global Mental Health responded to comments on the global health concept clearances. Alliance members responded positively to both presentations and will receive additional information as the project and concepts develop. This fifteenth meeting of the Alliance continued the critical interactive dialogue between NIMH and some of its most important stakeholders that has characterized all of its past meetings.

Photographs

View additional images from the meeting on the NIMH Flickr photo stream at http://www.flickr.com/photos/nimhgov/sets/72157627545110963/ .

Outreach Alliance Speakers July 2011

Alliance Speakers (L to R): Dr. Ranganathan, Dr. Insel, Dr. Simon, Ms. Rovner, Dr. Little

Alliance members sharing views

Alliance members sharing views

Alliance members listening to presentations

Alliance members listening to presentations

Alliance members commenting on presentations

Alliance members commenting on presentations

Alliance members sharing views

Alliance members sharing views

Alliance members listening to presentations

Alliance members listening to presentations