Escaping the “Gray Zone” of Mental Illness

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.