270421 Innovative research collaborative: Building a dynamic data test-bed for community mental health agencies

Monday, October 29, 2012

Christopher R. Larrison, PhD , School of Social Work, University of Illinois at Urbana-Champaign, Urbana, IL
Alex Yahja, PhD , National Center for Supercomputing Applications - Institute for Computing in Humanities, Arts and Social Science, University of Illinois at Urbana-Champaign, Urbana, IL
Neil Jordan, PhD , Feinberg School of Medicine, Department of Psychiatry & Behavioral Sciences, Northwestern University, Chicago, IL
Rural community mental health agencies (CMHAs) primarily serve patients with chronic co-morbid mental illness and physical illness (CSMI-PI). In general, the service utilization, treatment outcomes, and disease trajectories of patients with CSMI-PI are poorly understood. CMHAs are independent, private non-profits that rarely have the resources or expertise to archive longitudinally and analyze the extensive quantitative and qualitative patient data they collect, and most typically do not aggregate data across multiple agencies. Data from CMHAs may contain a rich, untapped source of knowledge about the day-to-day services and treatment outcomes experienced by patients with CSMI-PI.

The presentation describes the development of the Region 5 Research Collaborative (RRC) and a live data test-bed that centralizes multiple CMHAs' patient data longitudinally. The RRC is an innovative community-university association that links together 12 CMHAs, the National Center for Supercomputing Applications, and mental health services researchers. The RRC CMHAs serve approximately 14,000 unduplicated patients (85% with CSMI-PI) per year across the rural southern quarter of Illinois.

The RRC's experiences with logistical, ethical, and legal issues connected with aggregating patient data from multiple CMHAs are identified and explored during the presentation. The processes utilized to encourage cooperation among RRC participants and the roles of business agreements and a common consent form in addressing the HIPAA and human subjects issues are discussed. Finally, the technical aspects of transferring data, structuring and securing the data test-bed as well as analyzing and representing the data in a meaningful manner that improve providers' knowledge of patients with CSMI-PI are presented.

Learning Areas:
Communication and informatics
Conduct evaluation related to programs, research, and other areas of practice
Program planning

Learning Objectives:
1) Participants will analyze the processes utilized to develop a research collaborative between rural community mental health agencies (CMHAs), university-based mental health researchers, and data experts from the National Center for Supercomputing Applications. 2) Participants will evaluate the legal and human subjects issues associated with CMHAs sharing data in a research collaborative. 3) Participants will identify the technical aspects of centralizing data from multiple CMHAs in one live data test-bed. 4) Participants will discuss the benefits of a research collaborative and a centralized live data test-bed for patients with chronic co-morbid serious mental illness and physical illness, providers, and CMHAs.

Keywords: Mental Health Services, Community Collaboration

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am an associate professor with over 15 years of research and professional experience with community mental health agencies and patients with serious mental illness.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.