David L. Shern, PhD, Director

National Advisory Board and Executive Committee meet

Members of the Center's National Advisory Board (NAB) and Executive Committee recently met in New York City to review the Center's progress, evaluate and critique the Center's research portfolio for national relevance, and identify emerging issues and opportunities critical for the Center's continuing development. Discussions were kicked off by David Shern, the Center's director, and focused primarily on the issues of a changing political environment, recovery, and multicultural research.

Changing political environment
Considerable time was devoted to discussing the changing political scene in New York and nationally. David Shern reviewed recent key changes in New York leadership involving Richard Surles's departure from the Office of Mental Health, considerable uncertainty about his replacement, and concerns regarding the State budget. Members of the NAB suggested that while these transition periods are always anxiety provoking, they may present opportunities for the Center. They advised the Center to look for opportunities to provide context for the new administration and perhaps to provide a balanced appraisal of issues that have emerged during the transition (e.g., state hospital releases and violence among persons with mental illness). Michael Hogan, William Anthony, and others suggested that the Center may be able to be-come a key player in synthesizing knowledge to inform policy debate much as the Boston University Center for Psychiatric Rehabilitation did when it redirected and expanded projects to address a policy shift on supported employment.

The NAB also discussed the need for awareness of potentially profound changes that may occur on the federal level in restructuring welfare systems. Kevin Con-cannon noted that the reformulation of state welfare pro-grams and the creation of overall human service block grants signal new opportunities for the study of human service systems as they are modified. He indicated that the Center should be aware of funding opportunities outside of the NIMH system involving HCFA, AHCPR or other federal agencies.

In general, the NAB identified the Center as providing important resources both to New York and the nation through this political transition. The Center, they added, may be seen as representing a very good, useful source of non-partisan government information.

Recovery
At the last NAB meeting, the Board suggested that the Center focus much more explicitly on understanding the recovery process. Since then, the Center has begun a systematic effort to better understand this process. Perhaps most importantly, it has conducted an intensive two-day conference that initiated a dialogue on recovery between consumers and researchers. A rough cut of a videotape that summarizes the content of the conference was presented to the NAB with discussion focusing on the meaning of and follow-up to the conference.

The discussion was introduced by Andrea Blanch and centered on the importance of dialogue in shaping the perspectives of key stakeholders. Kim Hopper, for example, reported that the Center-sponsored conference on informed consent last May helped researchers rethink the concept of informed consent and redesign research strategies to be responsive to the new knowledge gained.

The Board urged the Executive Committee and Center faculty to continue building on knowledge in this area and to inform participants in the process, all along the way, of the impact and results of their efforts.

Multicultural research
Pursuing multicultural research within the context of the state public mental health system was another topic of high priority for the Board and Executive Committee. In particular, Ethel Davis Jackson noted, as the nation moves forward with managed care approaches, research will be critical to the organization, financing, and delivery of culturally competent and sensitive services that improve outcomes for people from minority groups with severe mental illness.

Henry Tomes pointed out the difficulties of sorting out situations when race is brought into consideration. "It has to be ultimately dealt with by inclusion," he added, recommending that people of color be included in the Center's research agenda as researchers. Orlando Rodriguez agreed saying, "There could be more people like me representing other minority groups. They could be brought more into the work of the Center and could be here as resources."

The Board advised the Executive Committee to continue to move ahead with its conference later this Spring; to continue to build a network of people, with an orientation toward bringing people together; and to tap the expertise of multicultural researchers.

Multicultural Research Workshop planning under way

As part of an effort to strengthen its research portfolio on multicultural issues, the Center has been working in collaboration with the New York State Office of Mental Health's Multicultural Advisory Committee to plan a two-day working meeting to be held in Albany. Originally scheduled for mid-February, the meeting is to be rescheduled for later this Spring.

The purpose of the meeting will be threefold: to review the state of multicultural scientific research on providing treatment and support services to individuals from multicultural populations with severe mental illness, to examine the effects of programmatic and organizational variables on outcomes for individuals from multicultural populations with severe mental illness, and to identify relevant issues for developing an active multicultural focus in the Center's overall research agenda.

Concept papers solicited from the Center's faculty and from the research, policy and practice communities will be reviewed by members of the Center's Executive Committee and the Research Subcommittee of the Multicultural Advisory Committee. Concept papers selected for presentation at the meeting will serve as the basis for up to three pilot projects focusing on improving mental health services to multicultural populations. The goal is to provide funding for the pilot projects in order to develop them into full research projects worthy of external funding.

The Office of Mental Health's Multicultural Advisory Committee provides advice and recommendations on policy, programs, and activities regarding service provision to individuals from diverse ethnic and cultural backgrounds with mental illness. The Committee is chaired by Robert J. Grantham, PhD.

More recipient and family representatives added to National Advisory Board

As recommended by the National Advisory Board at its annual meeting last May, several new appointments have been made to strengthen the Board's recipient and family representation. Recently appointed to the Board are Llyn De Danaan, PhD, Brenda Lyles, PhD, Jacki McKinney, and Ron Schraiber, MA.

Dr. De Danaan is a cultural anthropologist at Evergreen State College in Olympia, Washington. Her interests include critical issues in development, healing, and mental health, especially the consumer/survivor/ex-client movement, education and training in diversity. Since 1992 she has been a member of the Consumer/Survivor Mental Health Research and Policy Group, a national focus group collaborating with the National Institute of Mental Health and the Center for Mental Health Services' Mental Health Statistics Improvement Program to influence mental health research and policy.

Dr. Lyles serves as deputy assistant administrator for the Mental Health and Mental Retardation Authority of Harris County in Houston where she is a community psychologist and deputy assistant administrator, with overall programmatic responsibility for and fiscal oversight of all component units and sections of the Psychosocial and Rehabilitative Services Department. She formerly served on the board of the National Alliance for the Mentally Ill.

Ms. McKinney previously worked for Project Share in Philadelphia and is bringing to the Board a direct, concrete perspective as a recipient of mental health services.

Mr. Schraiber is a patients' rights advocate for Metropolitan State Hospital, Protection and Advocacy, Inc., in Norwalk, California. His areas of expertise include client-centered research and analysis, homelessness and forensic issues, coordination of rights protection and self-help programs, and direct services in community and institution settings. From 1986-1989 he served as co-investigator with Jean Campbell, PhD, of the Well-Being Project.

Faculty appointments

Since last June, appointments to the Center's faculty include Alexis Abernethy, PhD, Ruth Brandwein, PhD, and Brennen Taylor, PhD. Dr. Abernethy is serving as a member of the Special Populations Core, Dr. Brandwein, as a member of the System Initiatives Core, and Dr. Taylor, as a member of the Methodology Core.

Dr. Abernethy is assistant professor in psychiatry (psychology) and a psychologist with the Department of Psychiatry, University of Rochester Medical Center, in Rochester, New York. Her areas of interest in research include evaluating cultural competence in medical students, psychology trainees, and emergency and pediatric residents and a revised anger management training program.

Dr. Brandwein is professor of social policy at the School of Social Welfare, University at Stony Brook, State University of New York. She previously served as Commissioner of the Suffolk County Department of Social Services and currently is a member of the Mental Health Services Council of the New York State Office of Mental Health.

Dr. Taylor recently joined the faculty of the School of Social Welfare at the University at Albany, State University of New York. Prior to this, he served as assistant professor in the Department of Social Work at Salisbury State University in Salisbury, Maryland, where his undergraduate teaching responsibilities included minority health care, social work with minorities, social work in health care, and social work in mental health.

Dr. Knight joins Executive Committee

In July of 1994, Edward L. Knight, PhD, joined the Center's Executive Committee as co-director of the System Initiatives Core.

To his new role, Dr. Knight has brought a background rich in consumer self-help and services research. "His leadership in the New York State self-help movement and his expertise in conducting research on the effectiveness of consumer self-help groups are critical to our continual efforts to shape an integrated program of mental health services research," says David Shern, the Center's director.

Dr. Knight is director of the Mental Health Empowerment Project in Albany, New York. Formerly affiliated with the Mental Health Association in New York State and known as the Mental Health Recipient Empowerment Project, the newly incorporated Mental Health Empowerment Project will continue to focus its efforts on the use of research results to promote self-help in improving the health and well-being of individuals with a diagnosis of mental illness. Dr. Knight earned his doctoral degree in sociology from The New School for Social Research.

Recovery, research and practice examined

The work of recovery and implications for psychiatric research and practice were examined by mental health service recipients, practitioners, and researchers from around New York State and the country at a two-day meeting in October sponsored by the Center, with funding from the National Institute of Mental Health, and the New York State Office of Mental Health's Community Support Programs, with funding from the Center for Mental Health Services.

An important goal of the meeting particularly among faculty of the Systems Initiatives and Special Populations cores was to work on making explicit the conceptual model underlying core research activities. Meeting objectives for those attending included:

• Reviewing research findings and hearing personal narratives that illuminated aspects of recovery
• Deepening their understanding of how the process of recovery unfolds and what facilitates it
• Exploring how individual practice or research relates to recovery
• Examining what the experience of and reflections upon recovery means for the research process and the development of a mental health services research agenda
• Beginning to build a foundation for future collaborations

Among the conference's presenters were Daniel Fisher, MD, PhD, a psychiatric survivor and Executive Director of the National Empowerment Center in Massachusetts; Dr. Richard Warner, a psychiatrist and anthropologist who is well known for his epidemiological work on the differential rates of recovery and interventions to facilitate the recovery process; and members of the "Recovery Dialogue" group, sponsored by the New York State Office of Mental Health.

According to Core co-directors Andrea Blanch, Kim Hopper, and Edward Knight, "The conference was generally seen as a good first step in rethinking our long-range research agenda and research process, introducing the concept of widespread consumer involvement in the Center . . . and identifying a number of potential research areas relevant to the experience of recovery." Follow-up activities to the meeting include a problem-oriented synthesis of ideas generated at the meeting, to which participants will be invited to comment, and a videotape summary of major themes.

Reports from the Research Cores

Below are brief reports from the Center's three research cores. Up-to-date descriptions of individual projects, including information on the progress of current studies, will soon be available in a new publication titled "Program of Research: September 1994."

Special Populations Core
Core directors: Kim Hopper, PhD, and Ethel Davis Jackson, RN, MS

• The major aims of the Special Populations Core continue to be gaining knowledge of problems presented by individuals with mental illness from "special needs" populations and identifying competing definitions of the problem areas as seen by interested parties, through descriptive epidemiological study and close exploration of local service ecologies. Core projects under investigation include:

  • Engaging the Homeless Poor with Severe Mental Illness: A Feasibility Study of Shelter Seekers in a Suburban County Co-investigators: Kim Hopper, PhD, Gary Haugland, MA, Carole Siegel, PhD, and Kenneth Terkelsen, MD
  • Substance Use Among Psychiatric Patients: Extent of the Problem and Nature of the Service Networks Co-investigators: Kim Hopper, PhD, Mary Jane Alexander, PhD, Marc Galanter, MD, Gary Haugland, MA, and Carole Siegel, PhD
  • Impact of Individual, Organizational and Interorganizational Factors on Use of Mental Health Services by Parolees with Mental Illness Co-investigators: Deborah Baskin, PhD, Ira Sommers, DSW, and Joel Dvoskin, PhD

  The Special Populations Core's original research agenda has been modified over the past year in two important ways. These modifications were designed to further establish the representation of alternative points of view on the mental health treatment system and its standard research protocol.

  The first modification stems from last May's working conference on informed consent and involves a change in procedures for soliciting and renewing informed consent from individuals participating in the Westchester County feasibility study. The human subjects protocol has been reviewed; provisions for reviewing and re-soliciting informants' consent have been strengthened and problem-solving procedures to deal with practical dilemmas in field settings have been identified. A revised human subjects protocol was submitted to Nathan Kline's Institutional Review Board.

• The second modification involves collaboration with faculty of the System Initiatives Core in exploring the process of recovery and making explicit the conceptual framework for Center studies. Specifically, in the Special Populations Core, attention has been focused on the analysis of changing belief systems of consumers/ survivors and of psychiatrists as evidenced in videotaped sessions of the Dialogue on Recovery.

System Initiatives Core
Core directors: Andrea K. Blanch, PhD, Mary E. Evans, PhD, Edward L Knight, PhD

• Activities of the System Initiatives Core over the past year have focused on implementing the core's five research projects, beginning to make explicit the implicit assumptions underlying the conceptual model of recovery that serves as the basis for the core's program of research, and preparing to be responsive to new research opportunities likely to emerge from the ongoing reform of the health and mental health delivery systems. Each of the core's research projects is actively under way. The projects and investigators include:

  • Crisis Decision Making Co-investigators: Bruce Way, MA, Jeryl Mumpower, PhD, and Thomas Stewart, PhD
  • Financing Public Mental Health: Recent Trends and Consequences Co-investigators: James Fossett, PhD, Sheila Donahue, MA, and Norman Brier
  • Implementation of Managed Care Programs for Persons in Need of Mental Health Services Co-investigators: Sheila Donahue, MA, Russell Massaro, MD, and Robert Nakamura, PhD
  • A Comparison of Three Service Integration Strategies on Intervention Processes and System Change Outcomes Co-investigators: Roger A. Boothroyd, PhD, John L. Sheets, MPH, Marian Schwager, MA, David Andersen, PhD, George Richardson, PhD, and Steven Huz, MPA
  • Self-Selection Distinguishing Factors: Participants and Non-participants of Mental Health Self-Help Groups Co-investigators: Sharon E. Carpinello, PhD, Edward Knight, PhD, Lynn Videka-Sherman, PhD, Andrea Blanch, PhD, and Carla Sofka, PhD

  In exploring their model of recovery, core faculty have been working to make explicit their conceptual framework for operationalizing core research studies and integrating activities associated with them. The process has involved bringing together mental health services researchers, practitioners, and recipients to examine the concept of recovery and describe what a mental health system might look like if its primary goal were to support people in recovery; to consider critical areas of inquiry and to ensure that the research agenda reflects these concerns; and to build collaborative relationships, encouraging the participation of recipients in designing and conducting research and identifying policy implications.

  To be responsive to new research opportunities, core faculty have been continually monitoring and assessing the public mental health system's rapidly changing policy environment and identifying opportunities to apply knowledge and techniques developed in current pilot projects, to observe and understand the behavior of a comprehensive organized system of care. As new research opportunities are identified, Core directors will be collaborating with faculty in developing plans and conducting evaluations.

Methodology Core
Core directors: Carole Siegel, PhD, and Russell Massaro, MD

• Under development in the Methodology Core are methodological approaches required to conduct services research projects on individuals with severe mental illness receiving care in a mental health system with both complex formal and informal components. Some of the core's activities address specific methodological needs of ongoing studies and other activities are more general, aimed at finding viable solutions to problems associated with the conduct of research in quasi-experimental and observational frameworks. Core research projects in progress include:

  • Development of a Service System Network Instrument Co-investigators: Mary Jane Alexander, PhD, William Trochim, PhD, and Carole Siegel, PhD
  • Differential Treatment Effects for Subgroups: Pre and Post Hoc Statistical Analyses Co-investigators: Dei-In Tang, PhD, and Eugene Laska, PhD
  • An Alternative to Propensity Scores Investigator: Shang Lin, PhD
  • Rate Setting for Managed Care Co-investigators: Carole Siegel, PhD, Kristine Jones, PhD, and Sheila Donahue, MA

  Over the past year, projects of the Methodology Core have been adapted to reflect current policy issues and current needs of services research. This is illustrated in the rate setting project by the introduction of a scenario to model the New York State Office of Mental Health's Medicaid managed care plan for individuals with severe mental illness.

Reimbursement methodologies being explored

As in other areas of health care, mental health planners, policy makers and providers are facing the challenge of containing costs while maintaining quality health care. Managed care approaches for individuals with severe mental illness have begun to appear across the nation.

Researchers in the Methodology Core are collaborating with colleagues in the System Initiatives Core to design and test managed care reimbursement methodologies emerging under state Medicaid and national health care reform. The methods under development are alternatives to capitation rates. They aim to contain costs and at the same time place providers at less financial risk.

A method that has been developed, called the integrated risk payment method, is a blended payment of three levels of costs. The costs blended are the actual client cost, the provider's average historical cost, and a group of providers average costs. A measure of financial risk related to the variability of costs for the provider and for the group of providers is used as the blending parameter. The payment is being adapted to specific Medicaid carved-out conditions that have been under consideration in New York State.

Assistant Director actively involved in Center

Since assuming the position of assistant director last September, David V. Wollner, MPA, has quickly settled into the routine of managing the Center's daily operations. Included among his responsibilities are administering the Center's $3.5 million budget, promoting research projects in the policy arena, formulating a communications program, overseeing the coordination of activities with collaborating institutions, and soliciting foundation support for research projects and Center initiatives.

Prior to joining the Center staff, Mr. Wollner served as a program associate in the New York State Senate Majority Program Office, where he coordinated the health, alcoholism, substance abuse, mental health, mental retardation and developmental disabilities, and youth legislative program areas for the Senate Majority Leader. There, he formulated policy recommendations, drafted program initiatives, and negotiated legislation on behalf of the Senate Majority Conference.

A graduate of Syracuse University, Mr. Wollner earned his MPA from the Nelson A Rockefeller College of Public Affairs and Policy, State University of New York. Following graduation from Rockefeller College, he served as a New York State Senate Legislative Fellow.

Dialogue explores medication noncompliance and related issues

Center faculty met in December to hear a presentation on findings from a multi-year NIMH-funded research project on the reasons for and consequences of medication noncompliance for individuals diagnosed with schizophrenia. Presented by Dr. Peter Weiden, director of the Schizophrenia Program, St. Luke's-Roosevelt Hospital Center in New York City, the findings served as the basis for a dialogue among practitioners, researchers, and consumers of mental health services.

Dr. Weiden's presentation focused on the public health dimensions of medication noncompliance and issues related to assessment; research results, including the reasons clients gave for continuing or discontinuing medication; and treatment and management recommendations.

Following his presentation, Drs. David Shern and Edward Knight facilitated a discussion that examined paradigmatic assumptions of the research and alternative interpretations from a recovery-oriented perspective. Discussion during the two-hour gathering focused on a number of related areas, including the use of coercion and forced treatment environments, the need for client-centered interventions, a call for further study of labeling, and the importance of not minimizing relapse.

An audiotape of the meeting is available for those interested in hearing portions of the dialogue. It can be obtained by calling the Center at (518) 474-9911 or (800) 430-3586.

Developer of consumer-oriented computer health program presents seminar

How consumers of health care are using technology to cope with the stresses associated with serious illnesses and to address important health concerns was the topic of a seminar presented in late September by David H. Gustafson, PhD, founder of the Center for Health Systems Research and Analysis at the University of Wisconsin, Madison. Dr. Gustafson, who has led the development of the Comprehensive Health Enhancement Support System (CHESS), presented an overview of the CHESS computer software program being used by consumers to deal with difficult health and well-being issues.

The goals of the CHESS system are to improve the user's health status, to change or improve health-related behaviors, and to improve the user's utilization of health services. Consumers using CHESS link with the computer system through microcomputers placed right in their homes. Users are able to connect to a network of experts and discussion groups, including other people who are coping with the same illnesses such as HIV infection, sexual assault, and stress and depression. They also are able to utilize a decision component to help them make health care choices that meet their own needs. Finally, consumers can gain answers to the most frequently asked questions about their condition, access an on-line library of articles and brochures, seek step-by-step support in making informed choices that maximize health, and receive emotional support through the presentation of a variety of personal stories of persons who have dealt with similar health-related stresses.

Users of the system report that it is an easily usable tool for monitoring their health. They also report that it reduces their sense of isolation and gives them a greater sense of control over their health status.

"Dr. Gustafson's presentation was relevant and timely for our researchers," says David Shern, the Center's director. "We are continually seeking to increase our understanding of self-help options that could effectively promote well-being in adults with severe mental illness as well as strategies to better employ state-of-the-art technology into our program and system interventions." The seminar was jointly co-sponsored by the Center, the Center for Policy Research, and the Center for Technology in Government.

Synopsis of Opening Address at the Conference on Unresolved Issues of Informed Consent in Field Settings

• By Kim Hopper, PhD

Dr. Sue Estroff, a medical anthropologist at the University of North Carolina, opened last May's Conference on Unresolved Issues of Informed Consent with reflections on "In-Formed Consent: Practice vs. Paper." The conference was held at the Rockland Psychiatric Center.

Dr. Estroff set herself three tensions to address: the "liars and thieves all" model of ethnography vs. morally "good enough" research practice; claims of knowledge vs. claims of authority; and canons of scientific disclosure vs. claims of relationship. All of these find their focus within a set of specific constraints that apply to ethnographic research in the psychiatric domain.

On the discipline's side, a "pervasive nervousness" about its warrant of sanctioned knowledge joins a native distrust of organizing bodies to make regulating guidelines difficult to come by. (Ethnographers are "an ornery bunch, skeptical of any exertion of authority, even, it seems our own.") Matters become more complicated when that discipline's attention settles upon the subject class of those diagnosed with mental illness. Estroff elaborated upon a miscellany of concerns: the powerful roles of both intrusive "others" (caregivers, relatives, etc.) and encompassing institutions in their lives; the long duration of research projects and disabling/discrediting illness conditions; a host of issues surrounding negotiations of personal identity (acceptance, denial, etc.); special protections extended to a socially stigmatized group; and, the substantial material inequality that exists between researchers and subjects.

Externally, two other forces have made themselves felt in recent years as well: the increasing commodification of practices and information (in particular, "intellectual property rights" akin to native archeological claims), and the steady growth of self-advocacy and activism among persons diagnosed with mental illness. Under such circumstances, "owning your own story" can be tantamount to controlling your self, an exercise of autonomy. Research attuned to such pressures and constraints may be framed as a "collaborative" process. The difficulties arise when one asks what that means in practice.

What might it mean to add to informed consent form warnings about the distant dangers of "self-recognition" in later publications? Is it possible for people to give truly informed consent to matters eventualities -- like seeing the details of one's darkest hours on the page for any and all to peruse -- that are literally "unimaginable" to the consenting subject? If we are serious about "collaborating" subjects, how ought we to include their critical perspective when analyzing fieldnotes, compiling narratives, formulating interpretations? How might room -- in presentations, publications, record -- Cbe made for dissenting informant "voices"? Does dissent always attest to a legitimate claim of having been wronged or misrepresented? If disciplinary worries about the difficulties of representation are to be taken seriously, then methodologically -- as well as morally -- we need to be clear about the what and how of our relationship to informants to fulfill standards of responsible research. Not only the conduct of research, but the quality and integrity of its yield are at stake.

Dr. Estroff went on to propose a number of working guidelines for giving credence to the seriousness of such concerns. In particular, she reported upon the value of a working group of researchers to handle moral conflicts as they arise in the field. For a committed group of co-investigators, this provides a regular forum for reviewing "normal" conduct, debriefing each other after interviews, addressing questions raised about questionable calls (when does repeated deferral become "refusal") and raising questions about untold/unseen conflicts. It means, in effect, conducting a kind of "group supervision" that condones "spirited disagreement" and seeks to be "judgmental but not punitive."

Not all such problems stem from the perplexities of this particular research domain. Some are the sort that ought to be more immediately remediable: the self-generated problems that arise from a competitive ethic of "ethnographic machismo" -- maximize follow-up rates, interview completions, numbers of subjects -- overly attentive to the demands of the bottom line; other commonplace venial sins -- promising more than we can possibly deliver to our subjects and IRBs both, seeing "refusals" as an indictment of our professional competence, failing to question the thrall of publishing. The exchange of money, too, complicates the relationship and muddles the terms of reciprocity in ways that merit closer scrutiny than researchers have given so far.

If anthropologists in particular can surrender their own claims to victimhood, give up pretense, find ways around the increasingly polarizing language of rights, and explore means of negotiating informant presences in their finished pieces, then real progress on these vexed issues is possible.

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Update May 1994

Update Sept. 1995

Last updated on November 8, 1996, by Elizabeth Pease