FAC T S H E E T
C O R P O R AT I O N
When and How Are We Engaging
Stakeholders in Health Care Research?
S
takeholder engagement in research refers to the involvement of patients, doctors, payers, and
other decisionmakers, from the early stages of setting priorities and forming research questions
through the final stages of implementing and disseminating results. Many advocates for
patient-centered outcomes research (PCOR) and comparative effectiveness research (CER) see collaboration between researchers and stakeholders as the best way to generate evidence that is relevant,
responsive, and trustworthy, and thus likely to be put into practice. The goal of CER is to help
people choose the most effective treatments for their individual needs; the use of PCOR can enhance
the impact of CER.
To establish a baseline understanding of the frequency and nature of reported stakeholder engagement, a team from RAND, Tufts University, and Brown University systematically reviewed more than
2,000 abstracts and 70 articles published since 2003. The team enlisted seven stakeholders—including
two patients—to assist with the design, conduct, interpretation, and dissemination of the review.
The study found significant variation in terms of both how and what researchers report about
stakeholder engagement (see the figure):
Frequency of Stakeholder Engagement, by Stage of Research
Reports of stakeholder engagement
50
45
Patients and the public
40
Providers
Payers
35
Policymakers
30
Product makers
25
Principal investigators
20
Purchasers
15
10
5
0
Identifying
research
priorities
Conducting
trials and
observational
studies
Disseminating Evaluating the
Performing
Conducting
and applying research project
simulation
systematic
findings
modeling and
reviews and
meta-analyses cost-effectiveness
analyses
(continued on back)
This fact sheet describes work done for RAND Health and is based on Concannon TW, Fuster M, Saunders T, Patel K, Wong JB, Leslie LK,
and Lau J, “A Systematic Review of Stakeholder Engagement in Comparative Effectiveness and Patient-Centered Outcomes Research,”
Journal of General Internal Medicine, Vol. 29, No. 12, December 2014, pp. 1692–1701 (EP-50516, www.rand.org/t/EP50516). To view
this brief online, visit www.rand.org/t/RB9820.
Who is engaged?
■Patients
and health care providers were the most frequent collaborators.
■Policymakers
■Payers,
and other researchers collaborated infrequently, or about 20 percent of the time.
product makers, and purchasers collaborated rarely, or less than 10 percent of the time.
When are they engaged?
■Stakeholders
were most frequently engaged in the earlier stages of research, when priorities are
determined and evidence is generated.
■Engagement
was least frequent in syntheses of previous research, simulation studies, guideline
development, and dissemination of findings.
The research team developed a 7-Item Stakeholder Engagement Reporting Questionnaire to
encourage more uniform reporting on collaboration with stakeholders. The team recommends additional studies to evaluate the impact of engagement on the relevance, transparency, and adoption of
research, as well as new tools and training opportunities to improve engagement methods throughout the life cycle of a research project.
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RB-9820 (2015)