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Escaping the “Gray Zone” of Mental Illness

SPH doctoral student uses his own bipolar disorder to create policy

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Jonathan Delman (SPH’90,’10) has spent his share of dark days in the "gray zone" of medical decision-making, so dubbed by a Canadianresearcher, where the best choice of any number of psychiatric drugsprescribed to treat his mental illness can differ, depending on howpatients themselvesweigh benefits and risks.

When Delman was hospitalized during the 1990s, clinicians onseveral occasions made medication decisions without seeking his input —sometimes prescribing drugs for his bipolar disorder that made himphysicallyill. Because a smorgasbord of medications are available for somediagnoses,medical decisions can fall into this "grayzone."

Now, as a doctoralcandidate in health policy and management at the School of Public Health, Delman is exploring medicationdecision-making with a researcher’s eye, hoping to find ways to prompt otherclients with serious mental illnesses to become more actively involved in theirown treatment.

He recently presented his thesis research to a packed conference room of fellow studentsand faculty at SPH —a long way from the difficult days that once had him bolting from McLeanHospital in Belmont,Mass., where the staff wanted to hold him against his will.

"Consumer involvement in treatment decision-making is acomplex process," he says. "Many consumers have had little experience and opportunity toimpact those decisions."

"The mental-health system has historically had apaternalistic approach, having been set up primarily by professionals, withoutsignificant consumer input," he says. "But I am hopeful, since policymakers andprofessionals are now working with consumers such as myself, to develop asystem that is ‘consumer-driven,’ where there is significant client involvementin clinical decision-making."

Delman, 49, who helped found and now runs a Massachusettsagency that evaluates behavioral-health programs, recently received nationalrecognition for his mental-health advocacy work: he is one of 10 Americans who received a $125,000 leadership award from the Robert Wood JohnsonFoundation. He plans to use the money to expand the work of his agency,Consumer Quality Initiatives (CQI), which is staffed mainly by people with mentalillness.

Delman’s transition from mental hospital inpatient to agencydirector, doctoral student, and award recipient unfolded over the past decade,as he left behind memories of six psychiatric hospitalizations and found hisfooting in the field of advocacy and research. Armed with a law degree from theUniversity of Pennsylvaniain 1984 and a master’s in public health from BU in 1990, he"came out" as a person with mental illness in the mid-1990s and set out toempower and educate others.

In 1999, he founded CQI,which conducts research and evaluation of existing behavioral-health servicesand surveys consumers about their needs. The Massachusetts Department of MentalHealth and Medicaid behavioral-health programs have contracted with CQI toconduct interviews and focus groups on consumers’ experiences withmental-health services in the state system.

Delman says that CQI has had to fight to gain legitimacy — inthe same way that he has.

"We were really under a microscope at first," he says. "Iwas, too, because I felt I had a lot to prove, as a person with a mentalillness, starting a consumer-driven organization. But I was excited to have theopportunity because I’m a driven person by nature. I said to my colleagues atthe time, ‘Failure is not an option’ — which, along with a lot ofencouragement, motivated them, as well."

Delman, who enrolled as a doctoral student at SPH three-and-a-halfyears ago, intends to focus his doctoral research on examining whatkinds of interventions work best to increase the involvement of clientswithserious mental illnesses in medication decisions. He said he hopes toexplore different types of "decision supports," such as coaching thatencouragesclients to ask questions of clinicians, or touch-screen kiosks thatprovideclients with information about medication options.

Medication decisions "can affect your life in a very bigway," he says. "From an outcome perspective, you want people to make thatdecision with their clinician, so that they will give the medication a realtry. Lack of adherence is a real issue."

Jim Burgess, an SPH associate professor of health policy andmanagement and Delman’s advisor, says Delman’s personal experience addsacompelling dimension to his research work.

"He spent a lot of time fighting for control of his ownlife," says Burgess. "When someone with his background does work in an arealike this, it deepens the research."

Delman, like many other students, is nowscrambling to balance his school work with his full-time job and his family. Heexpects to complete his Ph.D. in 2010. He also hopes to get more involved inmental-health advocacy nationally.

"It’s an interesting time for me," he says. "I’ve never reallypushed beyond my home base, in terms of visibility. There’s a lot on my plate,but I’m optimistic about where things are going."

This article was originally published in the BUSHP Insider.  

8 Comments

8 Comments on Escaping the “Gray Zone” of Mental Illness

  • Anonymous on 01.13.2009 at 7:50 am

    Escaping the "grayzone" of Mental Illness

    As a social work clinician, I couldn’t agree more with the focus of this article and the need for more attention to mental illness and the needs of people who have mental illness. Our systems need to provide attention to medications and to the responses of people who are taking these medications. For most people, a single medication does not resolve the symptoms of mental illness for life. Revisions, changes take time and patience and perseverance. Both the client and the practitioner need to work together as a team. Unfortunately the system does not always support this process. My best to Mr. Delman in his work and doctoral program.

  • Anonymous on 01.13.2009 at 11:49 am

    Escaping the "grayzone" of Mental Illness

    I think it is quite commendable what Mr. Delman is doing. This is an important topic that has failed to receive proper attention.

  • Mark Simes on 01.13.2009 at 1:47 pm

    "Gray Zone" of Mental Illness

    This work is of extreme importance. As an interdisciplinary researcher in neuroscience and mental illness, it is encouraging to see such active advocacy for incorporative, multi-dimensional and patient based treatment in the BU community; a true center for research on neuroscience, psychology and psychiatry dedicated to the enormous public health problem of mental illness in our country. This article highlights the unfortunate pitfalls of mental health care that stem from a lack of clear etiological understanding and the all too common ignorance of the patient’s experience. My own research addresses the necessity that the field take a veritable interdisciplinary and integrative approach in it’s research and treatment if patients are every going to be free from the perils of the “Gray Zone” that continues to characterize the phenomenon of mental illness itself. Congratulations and gratitude to Mr Delman for his courage! -msimes@bu.edu

  • Anonymous on 01.13.2009 at 3:03 pm

    Excellent article!

  • Anonymous on 01.13.2009 at 3:14 pm

    I have personal experience with these medication issues as well, having been kept on medications which I have had bad reactions to, or having the clinician tell me that I am reacting to the medication in a different way than I actually am. Input into the medication process by patients is often interpreted as “resistance to treatment” or “paranoia”, when it is often nothing more extreme than a patient trying to communicate discomfort with the medication.
    I am surprised and pleased to see this kind of research and advocacy going on. I think it is a great project to find ways to help clinicians and patients work together more coherently, as they have the same goals. I would love to learn more about your project, and I wish you well!

  • Anonymous on 01.13.2009 at 5:28 pm

    Similar Research

    Thank you to Mr Delman for his advocacy and to BUToday for drawing our attention to this important issue. Readers of this article might be interested to know what work of this nature has been taking place in other areas at Boston University. Specifically, for a number of semesters I’ve followed the work of UNI Professor Liah Greenfeld who in her interdisciplinary Modernity Seminar examines this “Gray Zone” of mental illness through the lens of a mentalist, sociological perspective. By incorporating a study of culture its relationship to the human mind, Professor Greenfeld’s research project brings together a number of specialists from relevant areas of mental health and engages in discourse that seeks to identify and eliminate factors contributing to the “Grey Zone” experienced by so many patients – a disproportionate amount of whom are college-age Americans with much to contribute to the dialogue.

  • Anonymous on 01.13.2009 at 6:58 pm

    I am very moved by this article. My son has struggled with bipolar condition, and has not yet made a career for himself. This story is inspiring. Keep up the good work Mr. Delman.

  • Anonymous on 01.14.2009 at 12:37 pm

    Grey Zone of Mental Illness

    Congratulations, very well done Mr. (almost Dr.) Delman! It is fantastic that you have been able to transform your very difficult experiences into a way to improve the field and help others. I too have Bipolar Disorder, and live fairly successfully with it after some very difficult years. I’m well-educated, have a professional job, and volunteer in mental health advocacy organizations. But I have yet to find a way to transition my skills into mental health advocacy as a full-time profession. In the meantime, I continue to be inspired by stories like this where people with mental illness are making wonderful contributions to the world — and are willing to admit their own illnesses. Congrats!

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