Engaging patients in health care epidemiology research: A case example

Published:October 10, 2018DOI:


      We describe stakeholder engagement from a Patient-Centered Outcomes Research Institute–funded project to identify patients’ research priorities for health care–associated infections (HAI). We summarize insights from these activities to highlight feasibility and benefits of stakeholder engagement in health care epidemiology research.Patients and caregivers who had an HAI experience were involved in a patient and caregiver stakeholder group. We engaged clinicians, infection prevention experts, state public health professionals, and quality improvement experts in an institutional stakeholder (IS) group in an academic tertiary care medical center.


      Through individual and combined group activities, we identified stakeholders’ HAI research priorities. Existing engagement resources from the Wisconsin Network for Research Support (WINRS) guided the process.


      Given the patients’ and caregivers’ experiences with HAIs, their perspectives broadened IS understanding of the impact of HAIs and the relevance of proposed research topics. After introductory activities described here, the patient and caregiver stakeholder group actively engaged with researchers and the IS group in discussing complex systems-level topics to reduce HAIs. We have sustained this engagement through continued collaboration.


      Our engagement experience provides one example of how patients can be engaged in health care epidemiology research. Our experiences and lessons learned may be helpful to others interested in stakeholder engagement.

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        • Mackie IT
        • Sheldrick CR
        • De Ferranti DS
        • Saunders GT
        • Rojas KE
        • Leslie KL
        Stakeholders’ Perspectives on Stakeholder-engaged Research (SER): strategies to operationalize patient-centered outcomes research principles for SER.
        Med Care. 2017; 55: 19-30
        • Hoffman A
        • Montgomery R
        • Aubry W
        • Tunis SR
        How best to engage patients, doctors, and other stakeholders in designing comparative effectiveness studies.
        Health Aff (Milwood). 2010; 29: 1834-1841
      1. Patient-Centered Outcomes Research Institute. What we mean by engagement. Available from: Accessed June 26, 2018.

        • Forsythe L
        • Heckert A
        • Margolis MK
        • Schrandt S
        • Frank L
        Methods and impact of engagement in research, from theory to practice and back again: early findings from the Patient-Centered Outcomes Research Institute.
        Qual Life Res. 2017; 27: 17-31
        • Jagosh J
        • Macaulay AC
        • Pluye P
        • Salsberg J
        • Bush PL
        • Henderson J
        • et al.
        Uncovering the benefits of participatory research: implications of a realist review for health research and practice.
        Milbank Q. 2012; 90: 311-346
        • Brett J
        • Staniszewska S
        • Mockford C
        • Herron-Marx S
        • Hughes J
        • Tysall C
        • et al.
        A systematic review of the impact of patient and public involvement on service users, researchers and communities..
        Patient. 2014; 7: 387-395
      2. Brett J, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, et al. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect 2014;17:637-50.

        • Concannon TW
        • Fuster M
        • Saunders T
        • Patel K
        • Wong JB
        • Leslie LK
        • et al.
        A systematic review of stakeholder engagement in comparative effectiveness and patient-centered outcomes research.
        J Gen Intern Med. 2014; 29: 1692-1701
        • Domecq JP
        • Prutsky G
        • Elraiyah T
        • Wang Z
        • Nabhan M
        • Shippee N
        • et al.
        Patient engagement in research: a systematic review.
        BMC Health Serv Res. 2014; 14: 89
        • Shippee ND
        • Domecq Garces JP
        • Prutsky Lopez GJ
        • Wang Z
        • Elraiyah TA
        • Nabhan M
        • et al.
        Patient and service user engagement in research: a systematic review and synthesized framework.
        Health Expect. 2015; 18: 1151-1166
        • Ellis L
        • Kass N
        Patient engagement in patient-centered outcomes research: challenges, facilitators and actions to strengthen the field.
        J Comp Eff Res. 2017; 6: 363-373
        • Cottrell E
        • Whitlock E
        • Kato E
        • Uhl S
        • Belinson S
        • Chang C
        • et al.
        AHRQ Methods for Effective Health Care.
        Defining the Benefits of Stakeholder Engagement in Systematic Reviews. Agency for Healthcare Research and Quality (US), Rockville(MD)2014
        • Ahmad R
        • Iwami M
        • Castro-Sanchez E
        • Husson F
        • Taiyari K
        • Zingg W
        • et al.
        Defining the user role in infection control.
        J Hosp Infect. 2016; 92: 321-327
        • Seale H
        • Travaglia J
        • Chughtai AA
        • Phillipson L
        • Novytska Y
        • Kaur R
        “I don't want to cause any trouble”: the attitudes of hospital patients towards patient empowerment strategies to reduce healthcare-acquired infections.
        J Infect Prev. 2015; 16: 167-173
        • Wyer M
        • Jackson D
        • Iedema R
        • Hor SY
        • Gilbert GL
        • Jorm C
        • et al.
        Involving patients in understanding hospital infection control using visual methods.
        J Clin Nurs. 2015; 24: 1718-1729
      3. Patient-Centered Outcomes Research Institute. Building Capacity to Improve Prevention Strategies and Treatment Options for Healthcare-Associated Infections. Available from: Accessed June 26, 2018.

      4. National Center for Advancing Translational Sciences. About the CSTA Program. Available from: Accessed June 26, 2018.

      5. University of Wisconsin Institute for Clinical and Translational Research. Stakeholder Engagement Resources. Available from: Accessed June 26, 2018.

        • Thomas GR
        • Kaiser BL
        • Svabek K
        The power of the personal: breaking down stereotypes and building human connections.
        Narrat Inq Bioeth. 2017; 7:: 27-30
        • Kaiser BL
        • Thomas GR
        • Bowers BJ
        A case study of engaging hard‐to‐ reach participants in the research process: Community Advisors on Research Design and Strategies (CARDS).
        Res Nurs Health. 2017; 40:: 70-79
        • Kaiser BL
        • Thomas GR
        • Cox E
        • Jacobsohn G
        Toolkit on Patient Partner Engagement in Research.
        (Available from) (Accessed June 26, 2018)
        • Safdar N
        • Anderson DJ
        • Braun BI
        • Carling P
        • Cohen S
        • Donskey C
        • et al.
        The evolving landscape of healthcare-associated infections: recent advances in prevention and a road map for research.
        Infect Control Hosp Epidemiol. 2014; 35: 480-493
        • Concannon TW
        • Meissner P
        • Grunbaum JA
        • McElwee N
        • Guise JM
        • Santa J
        • et al.
        A new taxonomy for stakeholder engagement in patient-centered outcomes research.
        J Gen Intern Med. 2012; 27: 985-991
        • Devine EB
        • Alfonso-Cristancho R
        • Devlin A
        • Edwards TC
        • Farrokhi ET
        • Kessler L
        • et al.
        A model for incorporating patient and stakeholder voices in a learning health care network: Washington State's Comparative Effectiveness Research Translation Network.
        J Clin Epidemiol. 2013; 66: S122-S129
        • Forsythe LP
        • Frank L
        • Walker KO
        • Anise A
        • Wegener N
        • Weisman H
        • et al.
        Patient and clinician views on comparative effectiveness research and engagement in research.
        J Comp Eff Res. 2015; 4: 11-25
        • Frank L
        • Forsythe L
        • Ellis L
        • Schrandt S
        • Sheridan S
        • Gerson J
        • et al.
        Conceptual and practical foundations of patient engagement in research at the patient-centered outcomes research institute.
        Qual Life Res. 2015; 24: 1033-1041
        • Shklarov S
        • Marshall DA
        • Wasylak T
        • Marlett NJ
        “Part of the team”: mapping the outcomes of training patients for new roles in health research and planning.
        Health Expect. 2017; 20: 1428-1436
        • Woolf SH
        • Zimmerman E
        • Haley A
        • Krist AH
        Authentic engagement of patients and communities can transform research, practice, and policy.
        Health Aff (Millwood). 2016; 35: 590-594
      6. Vanderbilt Institute for Clinical and Translational Research. Community Engagement Studio Toolkit. Available from: Accessed June 26, 2018.

        • Safdar N
        • Brys NA
        Engaging Veterans in Research Toolkit.
        (Available from) (Accessed June 26, 2018)
      7. Planetree International. Patient Engagement in Research: A Toolkit for Patient-Family Advisory Councils. Available from: Accessed June 26, 2018.

        • McKenzie A
        • Hanley R
        Planning for consumer and community participation in health and medical research: a practical guide for health and medical researchers.
        (Available from) (Accessed June 26, 2018)