Strengthening stakeholder-engaged research and research on stakeholder engagement
Abstract
Stakeholder engagement is an emerging field with little evidence to inform best practices. Guidelines are needed to improve the quality of research on stakeholder engagement through more intentional planning, evaluation and reporting. We developed a preliminary framework for planning, evaluating and reporting stakeholder engagement, informed by published conceptual models and recommendations and then refined through our own stakeholder engagement experience. Our proposed exploratory framework highlights contexts and processes to be addressed in planning stakeholder engagement, and potential immediate, intermediate and long-term outcomes that warrant evaluation. We use this framework to illustrate both the minimum information needed for reporting stakeholder-engaged research and the comprehensive detail needed for reporting research on stakeholder engagement.
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References
Papers of special note have been highlighted as: •• of considerable interest
1.
Concannon TW, Meissner P, Grunbaum JA et al. A new taxonomy for stakeholder engagement in patient-centered outcomes research. J. Gen. Intern. Med. 27(8), 985–991 (2012).
2.
Esmail L, Moore E, Rein A. Evaluating patient and stakeholder engagement in research: moving from theory to practice. J. Comp. Eff. Res. 4(2), 133–145 (2015).
•• Summarizes hypothesized impacts of stakeholder engagement and current evidence for these impacts.
3.
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. 29(12), 1692–1701 (2014).
•• Reviews prior literature and proposes a seven-item stakeholder engagement questionnaire.
4.
PCORI. PCORI Engagement Rubric (2014). www.pcori.org/sites/default/files/Engagement-Rubric.pdf.
5.
Hoffman A, Montgomery R, Aubry W, Tunis SR. How best to engage patients, doctors, and other stakeholders in designing comparative effectiveness studies. Health Aff. (Millwood) 29(10), 1834–1841 (2010).
6.
Lavallee DC, Williams CJ, Tambor ES, Deverka PA. Stakeholder engagement in comparative effectiveness research: how will we measure success? J. Comp. Eff. Res. 1(5), 397–407 (2012).
•• Discusses meta-criteria for stakeholder engagement in comparative effectiveness research.
7.
Guise JM, O'Haire C, McPheeters M et al. A practice-based tool for engaging stakeholders in future research: a synthesis of current practices. J. Clin. Epidemiol. 66(6), 666–674 (2013).
•• Provides a detailed review and checklist of best practices for stakeholder-engaged prioritization of research topics.
8.
O'Haire C, McPheeters M, Nakamoto E et al. Engaging stakeholders to identify and prioritize future research needs. In: Methods Future Research Needs Reports. Agency for Healthcare Research and Quality, MD, USA (2011).
9.
Deverka PA, Lavallee DC, Desai PJ et al. Stakeholder participation in comparative effectiveness research: defining a framework for effective engagement. J. Comp. Eff. Res. 1(2), 181–194 (2012).
•• Provides a conceptual mode for inputs, methods and outputs of stakeholder engagement in comparative effectiveness research.
10.
Jagosh J, Macaulay AC, Pluye P et al. Uncovering the benefits of participatory research: implications of a realist review for health research and practice. Milbank Q. 90(2), 311–346 (2012).
11.
Mullins CD, Abdulhalim AM, Lavallee DC. Continuous patient engagement in comparative effectiveness research. JAMA 307(15), 1587–1588 (2012).
12.
Burke JG, Jones J, Yonas M et al. PCOR, CER, and CBPR: alphabet soup or complementary fields of health research? Clin. Transl. Sci. 6(6), 493–496 (2013).
13.
Brett J, Staniszewska S, Mockford C et al. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect. 17(5), 637–650 (2014).
14.
Cottrell E, Whitlock E, Kato E et al. Defining the benefits of stakeholder engagement in systematic reviews. In: Research White Papers. Agency for Healthcare Research and Quality, MD, USA (2014).
15.
Camden C, Shikako-Thomas K, Nguyen T et al. Engaging stakeholders in rehabilitation research: a scoping review of strategies used in partnerships and evaluation of impacts. Disabil. Rehabil. 37(15), 1390–1400 (2015).
16.
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. 24(5), 1033–1041 (2015).
17.
Pandi-Perumal SR, Akhter S, Zizi F et al. Project stakeholder management in the clinical research environment: how to do it right. Front. Psychiatry 6, 71 (2015).
18.
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. 18(5), 1151–1166 (2015).
19.
Cukor D, Cohen LM, Cope EL et al. Patient and other stakeholder engagement in patient-centered outcomes research institute funded studies of patients with kidney diseases. Clin. J. Am. Soc. Nephrol. 11(9), 1703–1712 (2016).
20.
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. 31(1), 13–21 (2016).
21.
Mackie TI, Sheldrick RC, De Ferranti SD, Saunders T, Rojas EG, Leslie LK. Stakeholders’ perspectives on stakeholder-engaged research (SER): strategies to operationalize patient-centered outcomes research principles for SER. Med. Care 55(1), 19–30 (2016).
22.
Saunders T, Mackie TI, Shah S, Gooding H, De Ferranti SD, Leslie LK. Young adult and parent stakeholder perspectives on participation in patient-centered comparative effectiveness research. J. Comp. Eff. Res. 5(5), 487–497 (2016).
23.
Woolf SH, Zimmerman E, Haley A, Krist AH. Authentic engagement of patients and communities can transform research, practice, and policy. Health Aff. (Millwood) 35(4), 590–594 (2016).
24.
Effective Health Care Program. Learning modules: engaging stakeholders in the Effective Health Care Program (2016). http://effectivehealthcare.ahrq.gov/index.cfm/tools-and-resources/how-to-get-involved-in-the-effective-health-care-program/learning-modules-engaging-stakeholders-in-the-effective-health-care-program/.
25.
Ray KN, Ashcraft LE, Kahn JM, Mehrotra A, Miller E. Family perspectives on high-quality paediatric subspeciality referrals. Acad. Paediatr. 16(6), 594–600 (2016).
26.
Equator Network Enhancing the quality and transparency of health research. www.equator-network.org.
27.
Frerichs L, Kim M, Dave G et al. Stakeholder perspectives on creating and maintaining trust in community-academic research partnerships. Health Educ. Behav. 44(1), 182–191 (2016).
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© 2017 Future Medicine Ltd.
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Published online: 16 June 2017
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Strengthening stakeholder-engaged research and research on stakeholder engagement. (2017) Journal of Comparative Effectiveness Research. DOI: 10.2217/cer-2016-0096
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