Advertisement

Journal of General Internal Medicine

, Volume 34, Issue 3, pp 458–463 | Cite as

Practical Guidance for Involving Stakeholders in Health Research

  • Thomas W. ConcannonEmail author
  • Sean Grant
  • Vivian Welch
  • Jennifer Petkovic
  • Joseph Selby
  • Sally Crowe
  • Anneliese Synnot
  • Regina Greer-Smith
  • Evan Mayo-Wilson
  • Ellen Tambor
  • Peter Tugwell
  • for the Multi Stakeholder Engagement (MuSE) Consortium
Review Paper

Abstract

Stakeholder engagement is increasingly common in health research, with protocols for engaging multiple stakeholder groups becoming normative in patient-centered outcomes research. Previous work has focused on identifying relevant stakeholder groups with whom to work and on working with stakeholders in evidence implementation. This paper draws on the expertise of a team from four countries—Canada, Australia, the UK, and the USA—to provide researchers with practical guidance for carrying out multi-stakeholder–engaged projects: we present a list of questions to assist in selecting appropriate roles and modes of engagement; we introduce a matrix to help summarize engagement activities; and we provide a list of online resources. This guidance, matrix, and list of resources can assist researchers to consider more systematically which stakeholder groups to involve, in what study roles, and by what modes of engagement. By documenting how stakeholders are paired up with specific roles, the matrix also provides a potential structure for evaluating the impact of stakeholder engagement.

KEY WORDS

stakeholder engagement patient engagement patient-centered outcomes research research design international health 

Notes

Acknowledgements

Contributors

The authors wish to thank Amanda Borsky, Angela Coulter, Zoë Gray, Jeanne-Marie Guise, Sophie Hill, Joan Powell, Laurel Pracht, Beverly Rogers, and Beverly Shea for sharing resources from a variety of countries and for their detailed reviews of an earlier version of this manuscript. We thank MuSE project manager Jennifer Vincent for keeping this work on track and RAND colleague Kristin Sereyko for preparing the manuscript for publication.

Prior Presentations

This paper has not been presented at any previous conferences.

Compliance with Ethical Standards

Conflict of Interest

RG-S is President of Healthcare Research Associates, a for-profit consultancy based in Chicago, IL, that specializes in patient engagement in research. RG-S holds a contract with Boehringer Ingelheim. SC is a principal with Crowe Associates Limited, a for-profit company registered in England and Wales that specializes in patient and public involvement in research. SG’s spouse is a salaried employee of Eli Lilly and Company; SG owns stock in the company and has accompanied his spouse on company-sponsored travel. All other authors declare no conflicts of interest specific to this manuscript.

Supplementary material

11606_2018_4738_MOESM1_ESM.docx (29 kb)
ESM 1 (DOCX 28 kb)

References

  1. 1.
    Frank L, Basch E, Selby JV. The PCORI perspective on patient-centered outcomes research. JAMA 2014;312(15):1513–1514.CrossRefPubMedGoogle Scholar
  2. 2.
    Viswanathan M, Ammerman A, Eng E, et al. Community-Based Participatory Research: Assessing the Evidence. Evidence Report/Technology Assessment No. 99. AHRQ Publication 04-E022. Rockville, MD: Agency for Healthcare Research and Quality; 2004.Google Scholar
  3. 3.
    Patient-Centered Outcomes Research Institute. What we mean by engagement. Available at: https://www.pcori.org/engagement/what-we-mean-engagement. Accessed 24 Sept 2018.
  4. 4.
    Cottrell E, Whitlock E, Kato E, et al. Defining the benefits of stakeholder engagement in systematic reviews. Research White Paper. AHRQ Publication No. 14-EHC006-EF. Rockville, MD: Agency for Healthcare Research and Quality; 2014.Google Scholar
  5. 5.
    INVOLVE. Briefing notes for researchers: involving the public in NHS, public health and social care research. Eastleigh, UK: INVOLVE; 2012.Google Scholar
  6. 6.
    Domecq JP, Prutsky G, Elraiyah T, et al. Patient engagement in research: a systematic review. BMC Health Serv Res 2014;14(1):1.CrossRefGoogle Scholar
  7. 7.
    Concannon TW, Fuster M, Saunders T, et al. A systematic review of stakeholder engagement in comparative effectiveness and patient-centered outcomes research. J Gen Intern Med 2014;29(12):1692–1701.CrossRefPubMedPubMedCentralGoogle Scholar
  8. 8.
    Shippee ND, Domecq Garces JP, Prutsky Lopez GJ, et al. Patient and service user engagement in research: A systematic review and synthesized framework. Health Expect 2015;18(5):1151–1166.CrossRefPubMedGoogle Scholar
  9. 9.
    Forsythe LP, Ellis LE, Edmundson L, et al. Patient and stakeholder engagement in the PCORI pilot projects: Description and lessons learned. J Gen Intern Med 2016;31(1):13–21.CrossRefPubMedGoogle Scholar
  10. 10.
    Shea B, Santesso N, Qualman A, Heiberg T, Leong A, Judd M, Consumer-driven health care: building partnerships in research. Health Expect 2005;8(4):352–359.CrossRefPubMedPubMedCentralGoogle Scholar
  11. 11.
    de Wit M, Kirwan JR, Tugwell P, et al.. Successful stepwise development of patient research partnership: 14 years’ experience of actions and consequences in outcome measures in rheumatology (OMERACT). Patient 2017;10(2):141–152.CrossRefPubMedGoogle Scholar
  12. 12.
    Urquhart-Secord R, Craig JC, Hemmelgarn B, et al.. Patient and caregiver priorities for outcomes in hemodialysis: an international nominal group technique study. Am J Kidney Dis 2016; 68(3):444–458.CrossRefPubMedGoogle Scholar
  13. 13.
    Esmail L, Moore E, Rein A. Evaluating patients and stakeholder engagement in research: moving from theory to practice. J Comp Eff Res 2015;4(2):133–145.CrossRefPubMedGoogle Scholar
  14. 14.
    Forsythe LP, Frank LB, Workman TA, et al.. Health researcher views on comparative effectiveness research and research engagement. J Comp Eff Res. 2017;6(3):245–56. Available at:  https://doi.org/10.2217/cer-2016-0063. Accessed 24 Sept 2018.CrossRefPubMedGoogle Scholar
  15. 15.
    Mullins CD, Abdulhalim AM, Lavallee DC. Continuous patient engagement in comparative effectiveness research. JAMA 2012;307(15):1587–1588.CrossRefPubMedGoogle Scholar
  16. 16.
    Concannon TW, Meissner P, Grunbaum JA, et al. A new taxonomy for stakeholder engagement in patient-centered outcomes research. J Gen Intern Med 2012;27(8):985–991.CrossRefPubMedPubMedCentralGoogle Scholar
  17. 17.
    Deverka PA, Lavallee DC, Desai PJ, et al. Stakeholder participation in comparative effectiveness research: Defining a framework for effective engagement. J Comp Eff Res 2012;1(2):181–194.CrossRefPubMedPubMedCentralGoogle Scholar
  18. 18.
    Frank L, Forsythe L, Ellis L, et al. Conceptual and practical foundations of patient engagement in research at the patient-centered outcomes research institute. Qual Life Res 2015;24(5):1033–1041.CrossRefPubMedPubMedCentralGoogle Scholar
  19. 19.
    Patient-Centered Outcomes Research Institute. PCORI’s Stakeholders. Available at: http://www.pcori.org/funding-opportunities/what-we-mean-engagement/pcoris-stakeholders. Accessed 24 Sept 2018.
  20. 20.
    The Cochrane Collaboration. Cochrane Knowledge Translation Strategy. Available at: http://community.cochrane.org/sites/default/files/uploads/inline-files/Cochrane%20Knowledge%20Translation%20Strategy%20FINAL%20for%20website.pdf, April 2017. Accessed 24 Sept 2018.
  21. 21.
    Tugwell P, Robinson V, Grimshaw J, Santesso N. Systematic reviews and knowledge translation. Bull World Health Organ 2006;84(8):643–51.CrossRefPubMedPubMedCentralGoogle Scholar
  22. 22.
    Schiller C, Winters M, Hanson HM, Ashe MC. A framework for stakeholder identification in concept mapping and health research: a novel process and its application to older adult mobility and the built environment. BMC Public Health 2013;13:428.CrossRefPubMedPubMedCentralGoogle Scholar
  23. 23.
    O’Haire C, McPheeters M, Nakamoto EK, et al. Methods for engaging stakeholders to identify and prioritize future research needs. Methods Future Research Needs Report No. 4. AHRQ Publication No. 11-EHC044-EF. Rockville, MD: Agency for Healthcare Research and Quality; 2011.Google Scholar
  24. 24.
    Esposito D, Heeringa J, Bradley K, Croake S, Kimmey L. PCORI Dissemination and Implementation Framework. Princeton, NJ: Mathematica Policy Research; 2015.Google Scholar
  25. 25.
    Morain SR, Concannon TW, Wittenberg E. HIV, breast cancer and vaccines: what to high-profile cases reveal about stakeholder engagement in research? J Comp Eff Res 2017;6(1):43–49.CrossRefPubMedGoogle Scholar
  26. 26.
    Gradinger F, Britten N, Wyatt K, et al.. Values associated with public involvement in health and social care research: a narrative review. Health Expect 2015;18(5):661–675.CrossRefPubMedGoogle Scholar
  27. 27.
    Concannon TW, Kotzias V, Khodyakov D, Graff J, Fahey G. What makes stakeholders want to become involved in research? The RAND Blog. 2016. Available at: https://www.rand.org/blog/2016/05/what-makes-stakeholders-want-to-become-involved-in.html. Accessed 24 Sept 2018.
  28. 28.
    Concannon TW, Khodyakov D, Kotzias V, Fahey G, Graff J, Dubois RW. Employer, Insurer, and Industry Perspectives on Patient-Centered Comparative Effectiveness Research. Santa Monica, CA: RAND Corporation, 2015. Available at: http://www.rand.org/pubs/research_reports/RR1242.html. Accessed 24 Sept 2018 .CrossRefGoogle Scholar
  29. 29.
    Concannon TW, Friedberg MW, Hwang A, Wiitala K. Engaging Consumers in the Quality Measurement Enterprise. Santa Monica, CA: RAND Corporation, 2017. Available at: https://www.rand.org/pubs/research_reports/RR1760.html. Accessed 24 Sept 2018.CrossRefGoogle Scholar
  30. 30.
    Concannon TW, Kotzias V, Khodyakov D, Fahey G, Graff J. What do stakeholders say about comparative effectivess research? The RAND Blog. 2016. Available at: https://www.rand.org/blog/2016/04/what-do-stakeholders-say-about-comparative-effectiveness.html. Accessed 24 Sept 2018.
  31. 31.
    Forsythe LP, Frank LB, Workman TA, Hilliard T, Harwell D, Fayish L. Patient, caregiver and clinician views on engagement in comparative effectiveness research. J Comp Eff Res 2017;6(3):231–44. Available at: https://www.futuremedicine.com/doi/full/10.2217/cer-2016-0062. Accessed 24 Sept 2018.CrossRefPubMedGoogle Scholar
  32. 32.
    Xian Y, Wu J, O’Brien EC, et al.. Real world effectiveness of warfarin among ischemic stroke patients with atrial fibrillation: observational analysis from Patient-Centered Research into Outcomes Stroke Patients Prefer and Effectiveness Research (PROSPER) study. BMJ 2015;351:h3786. doi:  https://doi.org/10.1136/bmj.h3786.indd.CrossRefPubMedPubMedCentralGoogle Scholar
  33. 33.
    Concannon TW. Can Patient-Centered Outcomes Research Improve Health Care? BMJ 2015;351:h3859.CrossRefPubMedGoogle Scholar
  34. 34.
    Jull J, Mazereeuw M, Sheppard A, Kewayosh A, Steiner R, Graham ID. Tailoring and field-testing the use of a knowledge translation peer support shared decision making strategy with First Nations, Inuit and Métis people making decisions about their cancer care: a study protocol. Res Involv Engagem. 2018;4(6). DOI  https://doi.org/10.1186/s40900-018-0085-3
  35. 35.
    Institute of Medicine. Conflict of Interest in Medical Research, Education, and Practice. Washington: National Academies Press; 2009.Google Scholar
  36. 36.
    Harvard Business School Press. The Essentials of Negotiation. Boston: Harvard Business School Publishing; 2005.Google Scholar
  37. 37.
    Malhotra D, Bazerman MH. Negotiation Genius. New York: Bantam Books; 2008.Google Scholar
  38. 38.
    Institute of Medicine. Clinical Practice Guidelines We Can Trust. Washington: The National Academies Press; 2011.Google Scholar

Copyright information

© Society of General Internal Medicine 2018

Authors and Affiliations

  • Thomas W. Concannon
    • 1
    • 2
    Email author
  • Sean Grant
    • 3
  • Vivian Welch
    • 4
  • Jennifer Petkovic
    • 4
  • Joseph Selby
    • 5
  • Sally Crowe
    • 6
  • Anneliese Synnot
    • 7
    • 8
  • Regina Greer-Smith
    • 9
  • Evan Mayo-Wilson
    • 10
  • Ellen Tambor
    • 11
  • Peter Tugwell
    • 12
  • for the Multi Stakeholder Engagement (MuSE) Consortium
  1. 1.The RAND CorporationBostonUSA
  2. 2.Tufts Clinical and Translational Science InstituteTufts UniversityBostonUSA
  3. 3.The RAND CorporationSanta MonicaUSA
  4. 4.University of Ottawa Centre for Global HealthOttawaCanada
  5. 5.Patient Centered Outcomes Research InstituteWashingtonUSA
  6. 6.Crowe Associates LtdOxfordUK
  7. 7.School of Psychology and Public HealthLa Trobe UniversityMelbourneAustralia
  8. 8.Cochrane Australia, School of Public Health and Preventive MedicineMonash UniversityMelbourneAustralia
  9. 9.Healthcare Research Associates LLCChicagoUSA
  10. 10.Johns Hopkins Bloomberg School of Public HealthBaltimoreUSA
  11. 11.Center for Medical Technology PolicyBaltimoreUSA
  12. 12.Department of Medicine and School of Epidemiology and Public HealthUniversity of Ottawa, Ottawa Hospital Research Institute, Bruyere Research InstituteOttawaCanada

Personalised recommendations