The Center for Patient Partnerships is a hub for research, policy and community initiatives all designed to increase our understanding of:
- patients’ experiences in the health care system
- the influence patients have – and the influence they might acquire — to shape practice, programs and policy in the public domain.
CPP has committed resources to funding original research that fills gaps in our understanding of advocacy’s impact, and to developing the field’s first national archive of the advocacy literature. Center faculty also serve as advisors or participants on a range of field-building initiatives taking place around the country. Field-building work is emphasized throughout our service-based education, and many students develop their own field-building projects or participate in on-going faculty projects to fulfill our Certificate Program’s culminating Capstone requirement.
Archive of Advocacy Research
As the field of health and patient advocacy grows, it is crucial for policymakers and those engaged in improving the quality of health care to understand evidence-based advocacy practices; efficacy and aspirations for the role; and appropriate expectations for advocates’ skills and training. Our electronic Library of Health and Patient Advocacy will meet this need by gathering, organizing, and interpreting the literature in health/patient advocacy for several audiences.
- Advocacy Topics
- Health Threats
- How Advocacy Works
- History of Advocacy
- Need for Advocacy
- Advocacy Context
- Types of Advocates
- Educating for Advocacy
- Measuring Advocacy
Building the library is crucial because the relevant knowledge base is fragmented, scattered across a number of disciplines, and not yet organized in a usable format or framed by an overarching typology.
This library is intended for use by a variety of different actors in health care: patients, policymakers, scholars, and clinicians. Because each comes to this literature with differing prior knowledge, analytic skills, and expectations for how health advocates might be of use, the proposed library will have several different access portals. Each will be designed to provide the necessary background information and literature interpretation to make the archive comprehendible. And each portal will offer customized support services provided by graduate students to meet a diversity of needs.
Following an extensive process of development and refinement, this library currently catalogues over 1,700 peer-reviewed articles related to health and patient advocacy, categorized into ten domains and linked to a consistent set of key words that allow them to be searched and sorted across more than 100 attributes.
Advocating for Attention to Patient Voices and Engagement
- Collaborating with the Kaiser Family Foundation and the Robert Wood Johnson Foundation to design and implement a National Roundtable on the future of consumer assistance and navigation programs under health reform.
- Defining what medical professionalism looks like from the patients’ perspective, and published our findings as the lead chapter in a new book, Patient Care and Professionalism, from Oxford University Press (2013).
- Getting “Behind the Jargon” so often associated with the term “Patient Centered Care, ” and describing what matters most about it from the perspective of patients, in commentary published in the Journal of Health Politics, Policy and Law, 2013.
- Representing patients’ voices at the American Board of Internal Medicine’s annual meetings designed to stimulate dialogue on important health care issues, raising awareness and working toward meaningful solutions.
- Designing and implementing initiatives to engage patients in system design and quality improvement, including at UW-Health and in collaboration with the consortium of Cystic Fibrosis Specialty Centers in New York State.
A Voice for Patients in National Boards and Initiatives
Our faculty advise and participate in organizations and initiatives around the country that focus on patient voice and patient experience. Currently, these include:
- American Board of Internal Medicine Foundation
- The national Measure Applications Partnership
- The Institute of Medicine’s Initiative on Transdisciplinary Professionalism for Health
- A project on New Medical Technologies and Patient Voices
- The American Board of Internal Medicine Foundation, where we have been invited to represent the patient’s perspective at annual forums convened to stimulate dialogue on important health care issues in order to advance the nation’s health care quality agenda.
- The national Measure Applications Partnership, a public-private partnership that reviews performance measures for potential use in federal public reporting and performance-based payment programs. We represent the consumer perspective on the Clinician Workgroup.
- The Institute of Medicine’s Initiative on Transdisciplinary Professionalism for Health, designed to create a conversation about a “new professionalism” for health care professionals and health care educators who are increasingly challenged by the need to learn new technologies and to collaborate across disciplines. Center Director Meg Gaines led a session titled “Patient and Community Roles in Transdisciplinary Professionalism.”
- A project on New Medical Technologies and Patient Voices, convened by the Hastings Center for Bioethics in collaboration with the Federal Drug Administration. Click here for a PDF of Rachel Grob and Mark Schlesinger’s presentation, “Attuning Health Policy to the Diverse Experiences of Patients.”
Student Contributions to Field-Building
Field-building work is emphasized throughout our service-based education, and many students develop their own projects or participate in on-going faculty projects to fulfill our Certificate Program’s culminating Capstone requirement.
Student Capstones focused on system-level advocacy, patient voice, and/or patient experience include:
- Building a Consumer Advisory Council to Inform PPACA Implementation in Wisconsin
- Patient Voice in the Oncology Drug Development Process
- Patient Advocacy as an Employee Benefit: History, Rationale, Current State and Future Opportunities
- Bad Faith Denial Of Health Insurance Coverage In Wisconsin: Challenges And Opportunities