by Lisa Dixon, M.D., M.P.H

My medical degree, "M.D.," and title, "Research Director," together reflect my professional identities as a psychiatrist and a researcher. Like many of us in the field, a third role has shaped the direction of my research in psychiatry. My family has lived with severe mental illness for the last 30 years.

My purpose here is to describe my journey, informed by these roles, to improve services to persons with schizophrenia by focusing on working with families.

In the early 1990's I participated in the Schizophrenia Patient Outcomes Research Team (PORT) designed to share knowledge about the best treatments for schizophrenia based on a thorough review of the scientific evidence. I learned from reading dozens of scholarly articles about the benefits of family psychoeducation. Family psychoeducation, which includes the family and consumer in a joint treatment effort, uses behavioral approaches, and provides social support and education.

I was dazzled by the information from rigorous randomized clinical trials and learned that, for those who participated in family psychoeducation, relapse rates were cut in half, and that consumers also functioned better in the community. When family psychoeducation was added to medications, and lasted nine months or more, it almost doubled the benefits of medication. Family burden also declined.

The PORT team reviewed the professional literature and judged that family psychoeducation is an evidence-based practice. That designation suggests scientific studies consistently show the value of family psychoeducation and support its benefits.

But we also learned that standard care in the community fell below that best practice. Almost no families had access to family psychoeducation. We found that it was even uncommon in the United States for families to have access to clinicians for brief phone calls or meetings.

I spent the next several years working to disseminate family psychoeducation. This was initially very gratifying. I lectured at Grand Rounds and at national meetings of families and professionals pointing out the huge gap between what researchers knew were effective treatments like family psychoeducation, and what kinds of services are routinely delivered in practice. I tried to exhort, cajole, convince, and educate my colleagues. I offered my personal experiences as a family member--we never had access to a program of psychoeducation. Perhaps our family would have had an easier time had we been offered such a program. We would have known when to call the treatment team, how to cope with troubling behaviors, and when to back off.

With time, however, something troubled me. I noted that the most prominent family support and advocacy organization, the National Alliance on Mental Illness (NAMI), was not trumpeting family psychoeducation. NAMI promoted assertive community treatment and supported employment. It was either silent about family psychoeducation or, in some quarters, expressed concern that it would be competing for resources with NAMI's own program, the Family-to-Family Education Program. At that point, I knew little about the NAMI family program.

I was intrigued, and in the late 90's I began to investigate NAMI's family-to-family-program and discovered that it also dazzled. But it wasn't consumer outcomes that created the dazzle. It was being a part of a community of family members helping other family members that made the magic. When among the students and trainees in the family-to-family program, I also felt a common bond.

Given my own initial confusion about the differences between family psychoeducation and the NAMI family program, I realized it was important for me as a researcher to clarify the differences between the two programs. People who could benefit from this were unaware that family psychoeducation is an evidenced-based clinical practice, delivered by mental health providers aimed at reducing relapse rates of mental health consumers. This contrasts with The NAMI initiative which is a community-based program in which family members educate, teach coping skills, and provide emotional support to each other.

While there was extensive research about family psychoeducation, no data existed for the family-to-family program. I contacted Joyce Burland, the creator of family-to-family education education program, and offered to evaluate FFEP. My credentials got me in the door. My family member status sealed the deal. The results of our first study of the family-to-family program were published in 2001.

My research team at the University of Maryland School of Medicine has now conducted three studies of the family-to-family program, and the evidence indicates that it, too, helps families cope with mental illness. We are currently in the midst of a randomized trial in four counties in Maryland.

While my path brought me to research the NAMI program, I was still committed to disseminating the clinical program about family psychoeducation. I noted that several large-scale efforts to disseminate family psychoeducation in the U.S. were disappointing. In New York, for example, where the New York State Office of Mental Health mounted an impressive effort to implement programs at 35 different sites, the benefit was large, but it reached only a small number of families and consumers. The "toolkit" project from the Center for Mental Health Services had a similar experience.

Why did family psychoeducation have such a difficult time taking hold in the United States? Was there something unique, something distinctive about the nature of families in America? It was a question we struggled over but never quite resolved as we examined the program from different points of view.

We thought that while many of the efforts to implement family psychoeducation addressed substantial staff and administrative barriers, it was possible that the concerns consumers and family members were insufficiently considered.

My research team, now partially centered at the Baltimore VA Medical Center as well as community programs, asked why consumers and family hesitated. Not unexpectedly, consumers expressed a variety of concerns, such as about privacy. They were also uncertain about the benefits, and worried about burdening their families. And of course, once we began to think about it, we realized that it was essential to work with consumers to develop tools to make more informed and more empowered choices regarding their families' involvement in their care.

This brings me to my current agenda. We are developing a consumer-centered approach to optimize family involvement in mental health care. This program, called "Family Member Provider Outreach," utilizes a professional who also identifies as a relative of a person with mental illness. This professional starts by working with the consumer to identify pros and cons of family involvement and then uses standard techniques such as the provision of education, support and decision-making exercises to assist consumers decide what they want, and take action to meet their goals. We believe this will promote the use of family psychoeducation and help consumers meet their recovery goals. This study has just begun.

A lesson from my journey has been the need to push beyond the limits of evidenced-based practices, even those with proven benefits. If a quality program is not used, it is important to learn why. The identification and dissemination of such practices are both a goal and an endpoint. But they must also be a beginning of the next effort to expand our work to make it evidence-based, to be more comprehensive, inclusive, and recovery oriented.

Lisa Dixon, M.D., M.P.H., is the Director of Research for the Veterans Affairs (VA) Capitol Health Care Network Mental Illness Research Education and Clinical Center. She is also a Professor of Psychiatry at the University of Maryland School of Medicine.