2011

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Session Title: Tools That Value Vulnerable Populations
Multipaper Session 879 to be held in Laguna B on Saturday, Nov 5, 9:50 AM to 11:20 AM
Sponsored by the Disabilities and Other Vulnerable Populations
Chair(s):
Frank Martin,  Mathematica Policy Research, fmartin@mathematica-mpr.com
Valuing the Consumer: Logic Model Development for Programs Serving Marginalized Populations
Presenter(s):
Dianna Newman, Universtity at Albany, SUNY, dnewman@uamail.albany.edu
Anna Lobosco, New York State Developmental Disabilities Planning Council, anna.lobosco@ddpc.ny.gov
Abstract: Evaluation of systemic change endeavors has shown participatory methods of documenting and evaluating systems change to be more effective than top-down/management decision-making approaches. To determine if a program, policy, or legislative endeavor has changed the system, the voices and values of marginalized stakeholders are needed; however, direct inclusion of vulnerable consumers frequently is overlooked in the development of logic models. This is especially true for models related to systems change efforts. These models, reflecting policy change and legislation, generally include input from program staff and advocates speaking for program consumers, but actual consumer voices and values may not be directly included. Instead, programmatic values of time, resources, and prior experience frequently outweigh inclusion. This paper addresses how to: 1) value disadvantaged voices, not just represent them, 2) include these voices in systemic change logic models, and 3) provides examples (successful and not so successful) of inclusion and lessons learned.
Evaluating Research-to-Practice in Disability: A Knowledge Value Mapping Approach
Presenter(s):
Frank Martin, Mathematica Policy Research, fmartin@mathematica-mpr.com
Juan Rogers, Georgia Institute of Technology, jdrogers@gatech.edu
Abstract: This presentation will describe the use of knowledge value mapping (KVM) for evaluating knowledge translation (KT) initiatives in the disability arena. KT has emerged recently in the health science community as a means to address perceived gaps in the application of the best research to treatment of disease. Specifically, in the area of disability and rehabilitation research, federal policymakers have identified KT as an area for critical evaluation and outcome achievement. This presentation analyzes some of the issues raised by the notion of KT. First, it puts KT in the broader context of the evaluation of knowledge flow problems. Second, it introduces the knowledge value mapping framework as an avenue for addressing the fundamental issues that KT raises for research-to-practice evaluation. Third, it illustrates the application of the framework with a KVM case study of accessible currency.
Vulnerable Confidentiality: How to Balance Confidentiality with Data Collection of Vulnerable Populations
Presenter(s):
Sarah Chrestman, Louisiana Public Health Institute, schrestman@lphi.org
Susan Bergson, Louisiana Public Health Institute, sbergson@lphi.org
Michael Robinson, Louisiana Public Health Institute, mrobinson@lphi.org
Jack Carrel, Louisiana Office of Public Health, jack.carrel@la.gov
DeAnn Gruber, Louisiana Office of Public Health, deann.gruber@la.gov
Snigdha Mukherjee, Louisiana Public Health Institute, smukherjee@lphi.org
Abstract: The issue of protecting participants' confidentiality from an evaluation standpoint becomes increasingly more complex when working with vulnerable populations. Louisiana Positive Charge (LA PC) is a multi-component, statewide intervention to link HIV+ persons (including those incarcerated) into medical care. These clients are of a low socioeconomic status and mostly uninsured with multiple unmet needs who tend to move from clinic to clinic. While many partners are trained in HIPAA guidelines, most of the interventionists have never been trained in human subjects and ethics. Confidentiality issues around how data is collected, transferred, and shared as well as how to effectively and discreetly conduct outreach to locate clients who are out of care and link them into medical care arose during the implementation of LA PC. Topics to be discussed include challenges to maintaining confidentiality and potential solutions for improving the capacity of maintaining confidentiality with partners.

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