Outreach Partnership Program 2015 Annual Meeting: Overview
August 18-20, 2015
In August 2015, over 100 state and national mental health organizations met on the National Institutes of Health (NIH) campus at the Porter Neuroscience Research Center for the 2015 annual meeting of the NIMH Outreach Partnership Program (OPP). Outreach Partners from each state, the District of Columbia, and Puerto Rico, and representatives of some of the more than 80 national organizations that participate in the program came together to hear updates from NIMH and NIMH-supported researchers and to learn from their fellow partners. As one Partner noted, "this conference always provides information on trends and emerging knowledge which we use to keep our educational outreach relevant."
A nationwide initiative of NIMH’s Office of Constituency Relations and Public Liaison, the OPP is designed to increase the public’s access to science-based mental health information through partnerships with national and state mental health organizations.
NIMH Director Dr. Insel delivers opening remarks.
NIMH Director Thomas Insel, M.D., gave an update on the state of mental health research and NIMH research activities, including the release of the updated NIMH Strategic Plan for Research. National Council for Behavioral Health Executive Director Linda Rosenberg delivered the keynote address about the current mental health landscape, describing the many forces at play which are transforming the field, including implementation of parity and the Patient Protection and Affordable Care Act of 2010.
In a session devoted to addressing first episode psychosis, partners heard from Amy Goldstein, Ph.D., Associate Director for Prevention for the NIMH Division of Services and Intervention Research, about NIMH’s plans for a learning healthcare system for serious mental illness, the Early Psychosis Intervention Network (EPINET), as well as the latest findings from the Recovery After An Initial Schizophrenia Episode (RAISE) Early Treatment Program, from Principal Investigator, John Kane, M.D. with the Zucker Hillside Hospital/Hofstra University. The session closed with National Alliance on Mental Illness (NAMI) Minnesota Executive Director Sue Abderholden sharing how they are educating families and the public about first episode psychosis through a number of outreach efforts.
In a plenary session on suicide prevention efforts, Jane Pearson, Ph.D., Chair of the NIMH Suicide Research Consortium, provided a review of what is known on suicide risk detection and interventions in healthcare settings. She was followed by Ursula Whiteside, Ph.D., who described the NIMH-funded large practical trial of adults with serious thoughts of suicide. Substance Abuse and Mental Health Services Administration Suicide Prevention Branch Chief, Richard McKeon, Ph.D., M.P.H. closed with a compelling case for the implementation of Zero Suicide initiatives in healthcare settings.
Engaging Consumers and Families in Research
A recurring theme of the meeting was the engagement of consumers and their families in research. Several speakers and presentations focused on the importance of including “experts with experience” in the design and development of research.
Panel members address questions during plenary on patient-centered research.
In the opening plenary on patient-centered research, the National Human Genome Research Institute Director Eric Green, M.D., Ph.D. and Massachusetts General Hospital's Andrew Nierenberg, M.D., described two initiatives, the U.S. Precision Medicine Initiative and the Mood Patient-Powered Research Network, which will change the way participants engage and interact with research and researchers. Megan O’Boyle, the mother of a child with Phelan-McDermid Syndrome (PMS), delivered an inspirational presentation on how parents and families can be mobilized to drive research through her experience as a board member of the PMS Foundation and principal investigator of the PMS Syndrome Data Network. Dr. Insel, who moderated this session, noted that “There’s a whole movement that’s taking place now where patients are taking charge…and the culture of that science is going to be very different than the way it’s been.”
PANDAS Network Executive Director, Diana Pohlman, comments during the opening session.
In the plenary session on suicide prevention, Dr. Whiteside returned to this theme when describing Now Matters Now, a web-based suicide prevention intervention based on Dialectical Behavior Therapy developed with the input of individuals who have experienced suicidal thoughts.
The final morning session revisited the theme of families engaging and driving research, in a discussion about Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections/Pediatric Acute-onset Neuropsychiatric Syndrome (PANDAS/PANS). Diana Pohlman, Executive Director of the National Partner organization, PANDAS Network, and a local clinician, Elizabeth Latimer, M.D. of the Latimer Neurology Group, provided an overview about PANDAS and the importance of family involvement in research discoveries for this little-known disorder.
Throughout the meeting speakers addressed not only the importance of engaging and listening to consumers and families in research, but also how researchers, advocates, and families can work to foster and encourage that engagement to improve clinical research.
Partner Sharing Session
The 2015 meeting featured a number of Partner sharing opportunities. Over 30 Partners and other organizations shared their education and outreach activities in the Partner Sharing Session, a hands-on opportunity to learn how others are disseminating research and educating the public in their states.
Postpartum Support International shares their activities supporting postpartum women, their family members, and providers.
One topic of particular interest to partners was the mental-health needs of perinatal women, which were discussed at the Sharing Session and in a breakout session. In addition to sharing Mental Health America of Georgia's efforts in the Sharing Session, Sarah Schwartz began the breakout session by providing an overview about perinatal mood and anxiety disorders and how the Healthy Moms project is addressing the issue in Georgia. In addition, NIMH staff described a new initiative, Mental Health Across the Lifespan, a partnership with the Delta Sigma Theta Sorority, which seeks to raise awareness about issues affecting women and their families throughout the lifespan, including postpartum depression. A new video about postpartum depression was debuted for the partners.
In addition, Outreach Partners and Federal staff discussed outreach activities and strategies for reaching immigrant and refugee populations during a breakout session and the Sharing Session. PK Subedi from the Administration on Children and Families Office of Refugee Resettlement (ORR) kicked off the breakout session by providing an overview about the status of refugees in the United States and the particular mental health needs of these communities. He shared how ORR is addressing these needs and highlighted a video series created to help prevent suicide among Bhutanese refugees.
SSG staff participating in the Sharing Session.
This breakout session also featured Erica Shehane and Dorothy Vaivao from the Southern California Outreach Partner, Special Service for Groups (SSG), who described their outreach efforts to Korean and Samoan immigrants as well as Ana Maria Sawyer who presented about NAMI Alabama's educational activities with Hispanic and Asian immigrant communities in the state, including agricultural migrant workers.
Partners have relayed the importance of these sharing opportunities, including one who said, “I had an opportunity to meet with several Outreach Partners, and they shared a lot of valuable information and ideas that I will be taking back with me and use [sic] to implement in my work as an outreach specialist to underserved communities.”
Educating the Public about Research Opportunities
The final session of the meeting provided Partners with information and resources to educate the public about research and study participation. Diana Morales, NIMH OPP Director, who introduced the session, detailed the importance of clinical research, the challenges faced in education and recruitment, and the role Partners can play in educating their constituents about studies. As the majority of trials struggle to recruit participants, “It’s really critical that we get people involved in clinical research,” Ms. Morales told meeting participants. “If we don’t do it, who will?”
She was followed by Kalene DeHaut, Recruitment and Community Relations Specialist in the NIMH Division of Intramural Research Programs, who described recruitment efforts for NIMH and provided insight into the information participants need and want prior to participating in a trial. She shared examples of how Partners could incorporate clinical trials information into their educational activities.
Dr. Thomas delivers presentation about Building Trust initiative. Source: NAMI New York State
The final speaker, University of Maryland, College Park Center for Health Equity Director Stephen Thomas, Ph.D., relayed the need to strengthen the capacity of researchers and community members to work effectively with each other to increase participation in research. He described tools available through the NIH-funded Building Trust Between Minorities and Researchers Initiative, which both support the development of culturally competent researchers and help educate minority communities to be informed decision-makers in the research process. One new Partner found the session to be instructive and plans "to advocate for more of our consumers to participate in research."
In summary, the meeting provided a mix of research updates and practical applications of knowledge. As one participant noted, “I look forward to this conference each year as I always leave inspired and with new ideas.”