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Author: Ken Duckworth, M.D. - 12/19/2014
When people take the NAMI Family-to-Family class, they know it makes a difference for them. In a world that demands outcomes, however, it is also important to show that this result is due to the course, rather than happenstance or the passage of time. In 2011, a team of NAMI Affiliates in Maryland and University of Maryland researchers, led by Lisa Dixon, M.D., M.P.H., did just that.
Following the publication of the first randomized control trial of Family-to-Family, it was listed as an evidence-based practice by the National Registry of Evidence-Based Programs and Practices (NREPP) in 2013. This was a monumental moment that everyone connected with NAMI should be proud of. To honor Dr. Dixon for her work, NAMI is presenting her with the 2014 NAMI Scientific Research Award on Nov. 13. The NAMI Scientific Research Award is supported by the Peter Corbin Kohn Memorial Fund. In addition to her work with Family-to-Family, Dr. Dixon is the principal investigator on the NIMH Recovery After Initial Schizophrenia Episode (RAISE) Implementation and Evaluation Study, and is leading an innovative program, OnTrackNY, a statewide initiative designed to improve outcomes and reduce disability for the population of individuals experiencing their first episode of psychosis.
Dr. Dixon’s grants have focused on improving the quality of care for individuals with serious mental health conditions, with a particular emphasis on services that include families, reducing the negative impact of co-occurring addictions and medical problems and improving treatment engagement and adherence. I recently had the chance to speak with her about her work.
Your work in studying NAMI Family-to-Family (F2F) was a great partnership with NAMI and Joyce Burland, a current NAMI board member and former NAMI director of education. Tell us about that special partnership.
Joyce is a phenomenal person whose accomplishments and vision changed the world. When we began working together, we each had a different model of how knowledge is created and sustained. She had the framework of experience—I came more from a traditional scientific understanding of the creation of knowledge. Our partnership involved connecting those two frameworks. I will never forget our first conversation when I asked Joyce if she would be willing to subject the intervention [program], F2F, to research. She responded that F2F is not an intervention, it is a movement, it is a state of consciousness, and a way of living. So we moved from there.
We first learned to trust each other by talking over each decision. What outcomes did she expect from F2F? How could we measure them? How would the assessments be done? Joyce was at the table, contributing ideas, problem solving, and celebrating success. We did three consecutive quantitative studies culminating in the randomized trial. Over the course of those successful studies, I think Joyce realized the power of the traditional scientific approach in demonstrating that F2F changed lives.
There were many other important people who participated in this partnership at NAMI Maryland and at the University of Maryland. We all worked together to make the studies happen.
I read that the cohort of people in Family-to-Family sustained their gains in a follow-up study. Are there plans to do another follow-up?
Each of our F2F studies followed participants for six months after they completed the program. And each of those studies found that participants retained the gains they had made at the end of the programs without any specific follow-up supports.
You were once an ACT (Assertive Community Treatment) doctor. Tell us about that experience and how it informed your research, and your perspective on the model.
My first job after I completed my research fellowship was to be the medical director of an ACT team that was created as part of an NIMH-funded randomized trial led by Tony Lehman comparing ACT to enhanced usual care. This was way back in 1991 when there was limited evidence regarding the effectiveness of ACT in reducing homelessness and housing instability. This experience completely changed my way of understanding recovery and hope in the lives of individuals living with mental illnesses.
The team included two full-time consumer advocates who had lived experiences of homelessness and/or mental illness, as well as a family outreach worker. We had access to Section 8 housing vouchers. I was amazed by how our hybrid team of professionals and peers could engage with the participants and help them to escape the distressing cycles of hospitalization, and find comfort and joy in their lives. I saw the power of partnership in mental health treatment.
Do you still have a practice? Has your approach changed over time?
I have a small private practice and do some consultations. I have noticed that there is a great need to simplify the medication regimens of many people I see. I believe my approach has remained fairly consistent once I saw how partnership can operate in treatment. I also am grateful for the wonderful training and supervisors I had at Payne Whitney Clinic. While the orientation was generally more analytic and used more transference-based approaches than I now use, I was taught to listen and show respect. Perhaps I am more comfortable than I once was in sharing my own experiences.
How can we get more psychiatrists interested in community mental health?
Expose psychiatrists in training to great mentors and the power of partnership.
You have shown that evidence-based programs work for people living with serious mental illnesses. How do we get them funded?
I think this requires advocacy, fighting stigma and the wise use of data. I also think we need to develop better and more effective ways to train the workforce in delivering these practices so that if they are funded, they work.
You were a leader in establishing the PORT (Patient Outcome Research Team) Guidelines, which brought research rigor into the care of people with schizophrenia. What did you take away from the effort, and will it continue?
I believe the PORT effort was a critical early contributor in the effort to direct psychiatric treatment toward the delivery of evidence-based practices. I personally learned how to do systemic reviews, and came away with a huge respect for all of the rigorous research conducted by colleagues all over the world. It was a privilege to be in a position to synthesize this work across multiple treatment modalities.
Can you tell us about your connection to the RAISE study and OnTrack?
The NIMH funded two RAISE projects. Both projects fielded what are now known as Coordinated Specialty Care (CSC) models that provide services to individuals with First Episode Psychosis (FEP). As described by NIMH, CSC programs are our current best approximation of evidence-based practices for people experiencing FEP. Dr. John Kane’s national project, the Early Treatment Program, is a site-level randomized trial. We eagerly await the results of that important trial.
I had the opportunity to lead a second RAISE project called the RAISE Implementation and Evaluation Study (RAISE-IES). This study included a collaborative team from the University of Maryland and Columbia, as well as Maryland’s Mental Hygiene Administration and New York’s Office of Mental Health (OMH). In this study, we evaluated the impact of the RAISE Connection program, a multidisciplinary and multi-element CSC program, studied client and family engagement with it, and developed tools to support its national dissemination and implementation.
The RAISE Connection program provided the foundation for OnTrackNY. I am grateful that New York’s Office of Mental Health gave me the opportunity to lead OnTrackNY. Our first task was to come up with a name! As reflected in our positioning statement, OnTrackNY in an innovative program for adolescents and young adults who have recently had unusual thoughts or behaviors or who have started hearing or seeing things that others don’t. OnTrackNY helps people achieve their goals in school, work or relationships.
We have four sites operating and are planning to triple that with support from the block grant. Because we have developed tools and methods for distance learning, we are also in a unique position to provide technical assistance to other states that are trying to implement FEP programs. Our national program is called OnTrackUSA, and we welcome the opportunity to participate in this national wave.
I hope that the excitement and investment in care for individuals who have just recently developed psychosis will lead to research on better treatments and greater understanding of illness. I also hope that these programs serve as a catalyst to transform the system for all.
How do we get more researchers like you? Is there a pipeline or mentoring program?
There are many wonderful, talented and passionate researchers out there. We need to give them funding opportunities.
Call the NAMI Helpline at
text "NAMI" to 741741