Patient Engagement in Redesigning Care

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About the Patient Engagement in Redesigning Care Toolkit, Version 2.0

Engaging patients in healthcare quality improvement and system redesign has become increasingly recognized as a key component of redesigning the US health care system to support patient-centered, high-quality primary care. There is growing recognition that patients play an integral role in the improvement of quality and safety.

This is evident in national guidelines and certification processes. For example, the medical home certification program through the National Committee for Quality Assurance and the final rule of the Centers for Medicare and Medicaid Services’ Accountable Care Organization Shared Savings Program require that patients participate in governance and quality improvement activities.

What is unique about this toolkit?

In a framework for patient engagement published by Kristin L. Carman and colleagues in Health Affairs, patients are engaged at three levels:

  • Direct care
  • Organizational design and governance
  • Policy making 

In an innovative program to engage patients in large-scale primary care transformation at UW Health—a large, academic health system in Madison, Wisconsin—patients were actively engaged in a process to redesign care at the team level, which was defined as a small care unit consisting of a care team, their panel of patients, and the core processes that produced the patterns and norms of the unit. 

This effectively filled in the gap between the “direct care” and “organizational design & governance” levels in the patient engagement framework by Carmen et al.

During this process, several materials were developed to help strengthen the role of patients in designing health care delivery and quality improvements. These materials were updated in 2017, with funding that is piloting patient engagement in team-based quality improvement activities in clinics and health systems beyond UW Health.

Who should use this toolkit?

This toolkit is intended for hospital and clinic directors, managers, clinicians, and researchers who are interested in the framework and tools for engaging patients as partners in health system quality improvement and change initiatives.

What does the toolkit contain?

This toolkit contains the following materials, which were developed as part of the patient engagement process described above.

What is it? Who is it for? What is in it?
Patient Engagement Toolkit for Team Members Employees in your organization who will be working with patients on quality improvement Tools that team members will need to successfully engage patients, such as:

  • Definitions and principles of patient engagement
  • Pre-engagement planning worksheet to clarify why you are engaging patients and which tools will be most effective
  • Engagement worksheet addressing how to successfully identify, recruit, invite, and match patients to jobs within the project
  • Resources and tools to guide the work
Patient Partners Welcome Packet Patients who will be participating in quality improvement activities at your organization Orientation information to help patients feel comfortable with participating in meetings and quality improvement activities, such as:

  • The value of being a patient partner
  • Patient engagement program philosophy
  • Goals of quality improvement
  • Examples of team-based quality improvement work
  • Tips for successful service
  • Other information and references

These materials are intended to serve as a starting point for customization by your organization to match your goals, processes, and patient engagement strategies.

What is new in Version 2.0?

Version 2.0 has been streamlined to make the work of engaging patients even easier.  We have added a Pre-Engagement Worksheet that addresses the 5-Ws:

  1. WHAT are you trying to improve?
  2. WHY will patients be able to help – what insights might they offer?
  3. WHO will have insights; which types of patients should be asked for their input?
  4. WHICH engagement methods will provide those insights? 
  5. WHEN should you use each of these methods? 

Toolkit efficacy

The Patient Engagement Program for which these tools were originally developed was evaluated using an outcomes-oriented approach,11 with mixed methods in a longitudinal design. 

The results from this program evaluation demonstrated that program participants learned how to engage patients, gained confidence in the task, and believed in the value patients bring to quality improvement.

In addition, despite initial skepticism, over time, team member attitudes about patient engagement improved. Teams that engaged patients utilized their input to change processes, communications, and physical layouts.

See the following publication for results and data:

Davis S, Berkson S, Gaines ME, Prajapati P, Schwab W, Pandhi N, Edgman-Levitan S. Implementation Science Workshop: Engaging Patients in Team-Based Practice Redesign – Critical Reflections on Program Design. J Gen Intern Med. 2016 Jun;31(6):688-95.

Development of this toolkit

Version 1.0 of this toolkit was developed by Sarah Davis, JD, MPA and Martha E. Gaines, JD, LLM, both of whom are from Center for Patient Partnerships and the University of Wisconsin – Madison Law School. It was developed in a collaboration with UW Health and made possible by funding from University of Wisconsin Medical Foundation. A participant engagement model was used for this program; as a result, some sample resources provided in this toolkit were created in collaboration with participating UW Health Microsystem team members.

Version 2.0 was revised by Sarah Davis, and Nancy Pandhi, MD, MPH, PhD from the University of Wisconsin Department of Family Medicine, with significant contributions from Nora Jacobson, PhD, Senior Scientist from the School of Nursing, UW-Madison.


Toolkit Citation

Davis S, Gaines ME, Pandhi N. Patient Engagement in Redesigning Care Toolkit, Version 2.0. Center for Patient Partnerships, UW Health, Primary Care Academics Transforming Healthcare, UW Health Innovation Program; 2017. Available at:


Research on the efficacy of the Patient Engagement Program was led by Nancy Pandhi, MD, MPH, PhD from the University of Wisconsin Department of Family Medicine. The project was supported by the Community-Academic Partnerships core of the University of Wisconsin Institute for Clinical and Translational Research (UW ICTR) through the Clinical and Translational Science Award (CTSA) program, previously through the National Center for Research Resources (NCRR) grant 1UL1RR025011, and now by the National Center for AdvancingTranslational Sciences (NCATS), grant 9U54TR000021. For version 1.0, Nancy Pandhi was supported by a National Institute on Aging Mentored Clinical Scientist Research Career Development Award, grant number 1 K08 AG029527. This project was also supported by the UW School of Medicine and Public Health from the Wisconsin Partnership Program, the University of Wisconsin Carbone Cancer Center (UWCCC) Support Grant from the National Cancer Institute, grant number P30 CA014520, and the Primary care Academics Transforming Healthcare Collaborative (PATH). The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH or the United States government.

We would also like to acknowledge the contributions of the following people to this project: Marc Korobkin, JD; Stephanie Berkson, MPA; Susan Ertl, MSN, RN; Pratik Prajapati, MHA; Celeste Demitrios; Lauren Fiedler, MS; Pamela Kittleson, RPh; William Caplan, MD; Sally Kraft, MD MPH; William Schwab, MD; Nora Jacobson, PhD; Zaher Karp, MPH; members of PATH; and the UW Health Microsystem team members, coaches, and patients who participated in the program.

Patient Engagement in Redesigning Care Toolkit on AHRQ Innovations Exchange

The Patient Engagement in Redesigning Care Toolkit is included as a QualityTool in the Agency for Healthcare Research and Quality’s Health Care Innovations Exchange, a web-based program designed to support health care professionals in sharing and adopting innovations that improve health care quality. View the Patient Engagement in Redesigning Care Toolkit QualityTool page by clicking the button below.

About the Developers

Sarah Davis

Sarah Davis, JD, MPA is Director of the Center for Patient Partnerships and a Clinical Professor in the University of Wisconsin Law School. She leads trainings, and presents about health advocacy and stakeholder engagement in Wisconsin and internationally. She also collaborates on research projects and policy efforts to enhance the capacity of patients to influence health policy in multiple domains, and the responsiveness of the health care system to consumers’ experiences

Martha E. Gaines, JD, LLM is the former director of the Center for Patient Partnerships and was a Distinguished Clinical Professor in the University of Wisconsin Law School. She is a national speaker on patients’ experiences in the health care system and advises policy shapers in such forums as the National Academy of Sciences, the ABIM Foundation, and the National Patient Advocate Foundation.

Nancy Pandhi, MD, MPH, PhD is a Physician Scientist in the University of New Mexico Department of Family and Community Medicine. Her research program is directed towards effective ambulatory care redesign for vulnerable populations, with a focus on understanding the patient perspective.