Research Collaborators
Qualitative Research Project: Experiences with Illness
- Kelsey Delander, Project Coordinator
- Anne McKechnie
- Desiree Cabinte
Policy Research Project: Consumer Assistance Programs Evaluation
- Kelsey Delander, Project Coordinator
- Deb Cohen
- Alex Hartzman
Health Advocacy Archive Project
Research Collaborators
Mark Schlesinger, Ph.D.
Research Collaborator
Mark Schlesinger, Ph.D. is a professor of health policy and director of undergraduate studies at the School of Public Health and a fellow of the Institution for Social and Policy Studies at Yale University. Mark collaborates with Rachel on a qualitative evaluation of the Center’s patient advocacy services and with Rachel and Sarah on other health policy projects. He has worked with a variety of health advocacy initiatives and has for the past decade been on the board of directors at Community Catalyst, a nonprofit organization devoted to developing the capacity of consumer advocates to influence state-level health policymaking.
More
- Rosenthal M, M Schlesinger. Not afraid to blame: The neglected role of blame attribution in medical consumerism and some implications for health policy. Milbank Quarterly 2002; 80(1): 41-95.
- Schlesinger M, S Mitchell, B Elbel. Voices unheard: Barriers to the expression of dissatisfaction with health plans Milbank Quarterly 2002; 80(4): 709-755.
- B Elbel, M Schlesinger, A neglected aspect of medical consumerism: responsive consumers in markets for health plans Milbank Quarterly 2009; 87(3): 633-82.
- M. Schlesinger. Choice cuts: parsing policymakers’ pursuit of patient empowerment from an individual perspective Journal of Health Economics, Policy and Law 2010; 5(3): 365-87.
Mark’s scholarship centers on peoples’ decision-making processes in complicated circumstances, such as evaluating medical experiences, choosing among health care providers, or assessing the legitimacy of health and social policies. He has consulted to a half dozen federal agencies and more than a dozen state governments on issues ranging from informed consumer decision-making in medical settings to maintaining the viability of the nonprofit sector in American health care.
Qualitative Research Project: Experiences With Illness
Faculty Leadership: Rachel Grob and Mark Schlesinger
This study is an exploratory assessment of the impact of advocates (both formal and informal) on people with serious or life threatening illness and their caregivers. It draws on retrospective accounts, comparing an experimental group that has used formal advocacy services to a control group who has experienced similar serious health problems, but without access to formally trained advocates. Although the prevalence of advocacy services is growing, literature about the efficacy and impact of these services is limited. This will be the first comparative study to focus specifically on the qualitative impact of advocacy on people’s illness trajectories, using a detailed but open-ended protocol.
Kelsey Delander
Project Coordinator
Kelsey grew up on a small farm in western Wisconsin. She attended St. Catherine University in St. Paul for undergrad where she received her B.S.N. Kelsey is currently a registered nurse in Wisconsin and Minnesota. While she is passionate about all things health-related, she is especially interested in patient empowerment and health insurance. In the future Kelsey hopes to work in health law.
Anne McKechnie
Anne Chevalier McKechnie, PhD-candidate, RN, is a research assistant working in the Center for Patient Partnership’s National Initiatives program. Anne’s strong interest in advocacy in the health care setting drew her to this innovative program. She brings her knowledge of research methods, skill with interviewing and experience with qualitative data analysis to the current research project. As a graduate student pursuing her PhD in nursing science at the University of Wisconsin-Madison, Anne’s research focuses on understanding parenting development during the perinatal time for parents anticipating unexpected outcomes for their infants. Her dissertation involves the development of substantive theory regarding becoming a parent after prenatal diagnosis of a fetal structural anomaly (birth defect). Anne’s post-doctoral training will include using these dissertation findings to inform her construction of an empirically-based assessment of parents’ needs for both clinical and research applications.
Desiree Cabinte
Desiree Cabinte is a full time student completing her doctorate in Psychology at UW-Madison.
Policy Research Project: Consumer Assistance Programs Evaluation
Faculty Leadership: Rachel Grob, Sarah Davis, and Mark Schlesinger
Our study of patient protections focuses on program aspirations and performance from three perspectives: public officials, health advocacy groups, and individual consumers.
Our first objective is to assess through interviews how states interpret their consumer assistance responsibilities under the PPACA. We will build on extant research to design and field interviews with officials in each state about their vision for consumer protection/engagement and about how they interpret their own responsibilities therein. Our second objective will be to examine the role and assess the impact of advocacy groups and non-profit organizations involved with consumer assistance. Non-profit organizations are contracted by state agencies in approximately half of the states receiving federal CAP grants. Many of these play important roles educating consumers, responding to complaints, and participating in advisory councils. Other “outsider” advocacy groups have also actively sought to shape state-level consumer engagement in a variety of ways. Interviews with these key stakeholders will provide a second perspective on CAP implementation, and identify potentially replicable models of public/private partnership.
Kelsey Delander
Project Coordinator
Kelsey grew up on a small farm in western Wisconsin. She attended St. Catherine University in St. Paul for undergrad where she received her B.S.N. Kelsey is currently a registered nurse in Wisconsin and Minnesota. While she is passionate about all things health-related, she is especially interested in patient empowerment and health insurance. In the future Kelsey hopes to work in health law.
Deb Cohen
Deb is a Master’s degree candidate (2013) in the Health Advocacy Program at Sarah Lawrence College. She has focused a large part of her studies on underserved populations, the health care ecosystem, and the potential for individual and systemic change. Prior to re-entering the academic setting, Deb headed up a New York City healthcare public relations agency. There, she spearheaded and guided teams in disease-state awareness programming and implementation designed for patient and physician audiences in the neurosciences, oncology, diabetes, cardiovascular diseases and chronic pain. Bridging gaps between patients and their healthcare providers (and support networks) to improve diagnosis and treatment outcomes is the hallmark of Deb’s work.
Alex Hartzman
Alex Hartzman has an MPH and MPA from UW-Madison and is an alumnus of the CPP certificate program. His interest in consumer issues in health care as a broad systematic issue has brought him back to the Center to participate in the Consumer Assistance Programs Evaluation project. Alex currently works as a public health emergency preparedness planner at the Wisconsin Department of Health Services.
Health Advocacy Archive Project
Faculty Leadership: Sarah Davis, Rachel Grob, and Mark Schlesinger
This project will create a free, publicly-accessible electronic Library of Health and Patient Advocacy. It will support the learning, scholarship, policymaking, and health care empowerment of multiple constituents including students, educators, legislators, and patients. The interprofessional Center for Patient Partnerships (CPP) at UW-Madison is well-positioned to create this critical tool as a strategy to ensure that the emerging patient advocacy profession has access to crucial knowledge, and that diverse stakeholders can engage with the unique multi-disciplinary literature on patient voice, representation and advocacy.
Cristina Bain
Cristina is a graduate student working towards her PhD in Sociology at the University of Wisconsin, Madison; a transplant to the Madison community from Vermont. With an academic regional focus on Southeast Asia, Cristina has been studying Vietnam since 2006, including research trips to Hanoi, Ho Chi Minh City, and most recently Quang Ngai province in south-central Vietnam. She lived there for the 2008-2009 academic year on a Fulbright Research Fellowship, and her Masters thesis examines and recommends the inclusion of identity in structural-organizational analysis. She uses a development not-for-profit as a case study in this, addressing the shift in development policy/practice in the age of technology. Additional interests include organizational interaction with political and bureaucratic entities, and the use and implication of market-based solutions to social inequalities.
Ariel Baumwell
Ariel received her M.A. in Gender and Women’s Studies from UW-Madison. She studied discrimination in the health care industry against transgender and queer people. Her interest in patient advocacy developed after watching friends and community members struggle to navigate through various aspects of the health care industry including denial of insurance coverage, denial of care, provider attitudes, and institutional and systematic barriers in accessing quality care. She focused on community based and patient based empowerment.
Cari Cuffney
Cari is a Masters student in the Population Health Sciences department with broad interests in health services research and health policy. She completed her Bachelors at UNC-Chapel Hill in Anthropology and Political Science and after graduation worked in a third-party medical billing firm. After witnessing first-hand the frustrations and difficulties inflicted on patients by our current healthcare system she returned to school and is happy to be part of the change at the Center for Patient Partnerships while working on the Public Archive Project.
Lacy George
Lacy has a B.A. in Political Science from the UW-Madison and is currently pursuing a Master’s Degree in Social Work with a strong interest in macro level policy change. Through years of work in both nonprofit management and healthcare Lacy has developed a passion for advocacy and is excited to be part of the public archive project team at the Center for Patient Partnerships.
Amanda Lam
Amanda has a B.A. in Information Science from Cornell University. She is the team’s strategic communicator and will be designing the user interface for the health advocacy archive. She is excited to use technology to support health advocacy research that will translate to greater patient empowerment.
Rosa Plasencia
Rosa received her J.D. from UW-Madison in 2012. Her primary interests during law school included Client Advocacy, Health Care Law, and Consumer Protection. Rosa has participated in the Center’s Clinical Program as a Student Patient Advocate, and is currently working on the Public Archive Project. Before law school Rosa worked with people diagnosed with HIV and AIDS, and also worked at a cancer research publication organization to increase the prevalence of female and minority cancer researchers, and to promote science education initiatives.