Health advocacy is occurring in many places around the country and abroad. It is practiced in myriad ways, guided by varied purposes, ideals and expectations. As the field grows, it is critical to more comprehensively understand existing variation; to assess the impact of different advocacy models; and to focus the attention of scholars and policymakers on this research agenda.
The Center for Patient Partnerships directly documents the impact of advocacy services on patients through evaluation, field research, and synthesis of existing empirical studies – and we link this work back to practice through ongoing refinements to our own clinical model and by disseminating our findings. In 2011-12, we will also build a public archive and typology cataloguing the existing literature so that students, scholars, and policy-makers can also more easily take stock of where the field currently is, identify gaps in essential knowledge, and take action to move the field forward. Areas of inquiry that are important for understanding health advocacy include:
- Advocate/patient relationships: nature and impact
- History of health advocacy and patient advocacy
- Advocacy services, programs and initiatives: U.S. and international
- Education and training for advocates
- Health care and health policy: the influence of patients’ voices
Complementing the ongoing evaluation of advocacy’s impact, the Center and its affiliates have a growing portfolio of additional research projects related to advocacy. These include:
Research that is published or about to be published:
- R. Grob. 2011. “Newborn screening: guiding parents through the diagnostic maze.” Contemporary Pediatrics. 28(4): 38-47.
- Grob, R, M. Schlesinger, and The Authors, forthcoming 2011. “Principles for Enhanced Patient Participation in American Health Care and Policy” in Patients as Policy Actors Ed. B. Hoffman, N. Tomes, R. Grob, M. Schlesinger (New Brunswick, Rutgers University Press)
- 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.
- 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.
- Hurst, M., M. Gaines, R. Grob, L. Weil and S. Davis, “Educating for Advocacy in Settings of Higher Education.” In Patient Advocacy for Health Care Quality: Strategies for Achieving Patient-Centered Care, J. Earp, E. French, and M. Gilkey, eds., Jones and Bartlett: Sudbury 2006.
Research that is in the field or being developed:
- State Consumer Assistance/Patient Support Policy: A Comparative Analysis
- Comparative Analysis of Advocacy and Other Support Services
- The Social Compact for Advancing Team-Based Care
- Survivorship Care Planning
- Consumer Engagement in Health Systems Quality Improvement
Student Research Projects:
- Patient Expectations of Physicians Concerning Cost of Care
- Qualitative Assessment of End-of-Life Planning Services proposed through America’s Affordable Health Choices Act
- Interdisciplinary Medical Team Structure for the Treatment of Major Chronic Illness
- Evaluating policies on Health Industry Conflicts of Interest at Academic Medical Centers: Peer Pressure’s Positive Power
- Changes in Health Care Policy: An Assessment of the Patient Protection and Affordable Care Act and Its Patient Advocacy Implications
- Provider Roles in the Timing of Enrollment to Cancer Clinical Trials
- Collaborative Healthcare – The Implications of Using the Internet as a Health Resource on Doctor-Patient Relationships
Are You Interested in Sharing Your Cancer Story?
We want to learn about people’s experiences with cancer and their interactions with the health care system.
We are a group of researchers at the University of Wisconsin and Yale University who believe that gaining a better understanding of people’s experiences with illness is essential for making health care more accessible and understandable to patients.
We are looking for people who have had cancer or who have been caregivers for someone with cancer, involving an episode of treatment starting and completed between January 1st, 2008 and April 31st, 2011. Participants must be 18 years or older, live in the Midwest, and be willing to talk with us for about an hour.
If you want to be part of the Experience with Serious Illness Project, we will:
- Arrange a phone interview at a time that is convenient for you
- Make sure all the information you give us is kept confidential
- Pay you $20 for your participation
- Share the results of our research with you
If you are interested in participating or would like more information, please contact us at:
(845) 512-8485 or email@example.com
This study is entirely voluntary. It is perfectly fine if you decide that you don’t want to participate after learning more about the study.