Patient Engagement Workbook for Researchers

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About the Patient Engagement Workbook

Engaging patients and other stakeholders brings patient’s ideas and concerns to the forefront of research and has been identified as a critical component in the quest to improve health and healthcare. As such, the patient role in health and healthcare research has undergone a transformative shift in recent years. While this shift is exciting and promising, the process for effectively engaging patients remains unclear and is a challenge to many researchers. 

The Patient Engagement Workbook

This workbook was developed to guide researchers through the patient engagement process by providing the steps to be taken, along with considerations and suggestions, for the patient engagement process.

Who should use this workbook?

This workbook is intended for use by researchers and research staff who are preparing to engage patients (or other stakeholders) as members of their research teams.

What does the workbook contain?

This workbook contains 14 steps, with tips, for researchers and staff to use during the patient engagement process. Examples of the topics covered include:

  • Why engage patient partners on this study, and what will the cost of patient engagement be?
  • Defining the roles of patient partners on the team
  • Engagement logistics and identification/recruitment of patient partners
  • IRB and compliance issues to consider
  • Implications of your recruitment and engagement on other departments
  • Screening potential candidates
  • Formalizing the patient partnership
  • Training the research team and patient partners
  • Monitoring and evaluation
  • Closure at the end of the study

How should the workbook be used?

The materials in this workbook should be used as soon as a decision is made to engage patients in the research process, whether or not a specific study or research question has been identified.

The workbook is a PDF that you can download on the HIPxChange site after registering. Spaces are provided for notes and other documentation of decisions made about your engagement process.

We suggest that you print the workbook so that it is one slide per page, and then you can write your answers to the questions down accordingly. Alternatively, you may wish to translate the questions in the workbook into an editable format (such as a Microsoft Word document) if you want to type your organization’s responses to each section in an electronic format.

Development of the workbook

The Patient Engagement Workbook was developed by Sarah Madrid and Leslie Wright, both of the Institute for Health Research at Kaiser Permanente Colorado, in conjunction with the Health Care Systems Research Network’s Patient Engagement in Research Scientific Interest Group.

This project was supported by the Institute for Health Research at Kaiser Permanente Colorado. Additional support was provided by the University of Wisconsin School of Medicine and Public Health’s Health Innovation Program (HIP), the Wisconsin Partnership Program, and the Community-Academic Partnerships core of the University of Wisconsin Institute for Clinical and Translational Research (UW ICTR), grant 9 U54 TR000021 from the National Center for Advancing Translational Sciences (previously grant 1 UL1 RR025011 from the National Center for Research Resources). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health or other funders.

Toolkit Citation

Madrid S, Wright L. Patient Engagement Workbook. Health Care System Research Network. Published by the UW Health Innovation Program; Madison, WI; 2017.

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About the Authors

Sarah Madrid, MA is a Senior Project Manager at the Institute for Health Research, Kaiser Permanente Colorado. As founding co-chair in 2013 of the Health Care Systems Research Network’s (HCSRN) Patient Engagement in Research Scientific Interest Group (PER SIG), Madrid has focused on developing engagement methodologies and resources for researchers. In conjunction with Wright and other PER SIG members, she has developed and led workshops on engagement logistics, methods, and impact assessment. In 2015, Madrid also led the development of the Colorado Patient Partners in Research Network, now a PCORI-supported web-based mechanism for connecting research teams with potential patient partners that launched in 2016.

Leslie Wright, MA is a Senior Project Manager at the Institute for Health Research, Kaiser Permanente Colorado, as well as a Community Research Liaison (CRL) from the IHR and Co-chair of the HCSRN Patient Engagement in Research Special Interest Group. Since 2008, she has engaged local partners, patients and health providers to identify community health priorities, assisted academic and community investigators in designing locally relevant studies that address real partner, patient and provider needs, and developed strategies using Community Based Participatory and Patient Centered Outcomes Research methods.