Practical Guidance for Involving Stakeholders in Health Research
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 WORDSstakeholder engagement patient engagement patient-centered outcomes research research design international health
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.
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.
- 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.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.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.INVOLVE. Briefing notes for researchers: involving the public in NHS, public health and social care research. Eastleigh, UK: INVOLVE; 2012.Google Scholar
- 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.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.
- 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.Esposito D, Heeringa J, Bradley K, Croake S, Kimmey L. PCORI Dissemination and Implementation Framework. Princeton, NJ: Mathematica Policy Research; 2015.Google Scholar
- 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.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.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.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.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.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
- 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.Institute of Medicine. Conflict of Interest in Medical Research, Education, and Practice. Washington: National Academies Press; 2009.Google Scholar
- 36.Harvard Business School Press. The Essentials of Negotiation. Boston: Harvard Business School Publishing; 2005.Google Scholar
- 37.Malhotra D, Bazerman MH. Negotiation Genius. New York: Bantam Books; 2008.Google Scholar
- 38.Institute of Medicine. Clinical Practice Guidelines We Can Trust. Washington: The National Academies Press; 2011.Google Scholar