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“How Do I Participate
in PCOR & CER as a
Community Member?”
Lessons Learned from HFA &
PCORI Webinar Collaboration
By Julie Lesch, MPA and Krista Woodward, MPH, MSW,
of the Patient-Centered Outcomes Research Institute (PCORI)
A nn-Grete Tan, who has a son with hemophilia, remembers comparative effectiveness research (CER). CER tests the effec-
simply checking a box at her son’s clinical visits giving tiveness of two or more different treatments or inventions to
her consent to share his data and medical information for re- learn what works best and for whom.
search purposes. But she never heard whether her son’s infor-
mation contributed to any specific discoveries or whether it Patient and stakeholder engagement is the crux of PCORI, an
helped advance the science and treatment of hemophilia. independent research funder authorized by Congress in 2010.
PCORI funds CER that engages patients and other stakehold-
This experience rings true for so many patients. Patient and ers throughout the research process. PCOR does the same thing
stakeholder engagement in clinical research has long been a as CER, but intentionally asks patients and other stakeholders
hard-fought battle. Until recently, most patients had only par- what features or outcomes are most important to them and in-
ticipated as “subjects” being studied. They had seldom been volves them throughout the research process. PCORI aims to
given the opportunity to meaningfully engage in the planning, increase the amount of patient centeredness and meaningful
conduct, or dissemination of a research project. engagement in health research, which will ultimately improve
the speed, uptake and usefulness of clinical findings for all
However, research institutions like the Patient-Centered Out- communities.
comes Research Institute (PCORI) have recognized that pa-
tients and stakeholders have experiential expertise that should PCORI believes that patient and stakeholder engagement must
be used to inform clinical research. PCORI is working to ensure occur throughout a research project, including the planning,
that research is done differently and that patients are involved conducting, and dissemination phases. PCORI has observed
at every step of the process. that patient and stakeholder engagement has significant influ-
ence and impact on the overall outcomes of research projects
A recent HFA webinar led by Tan and Julie Kennedy Lesch, across therapeutic areas, populations and intervention types.
a PCORI Engagement Officer, highlighted the power of stake-
holder engagement in clinical research, particularly for individ- In PCORI’s view, engagement can take many forms, but always
uals with bleeding disorders. Their presentation spoke to the leads to the intentional and meaningful involvement of pa-
valuable role patients and caregivers can play as study partners, tients and stakeholders given their experiential expertise. The
and provided examples of successful engagement activities intensity of patient engagement can range from consulting to
and outcomes. directing a research project’s trajectory. Projects such as PRIDE
are important for training patients and stakeholders about how
This webinar was the second in a series for the Patient-centered they can be actively engaged and share their perspectives with
Research for Innovation, Development, and Education (PRIDE) researchers and clinicians.
project. PRIDE is an initiative funded through the PCORI Eu-
gene Washington Engagement Awards program that aims to In the webinar, Lesch spotlighted specific examples of suc-
foster communities prepared to advance patient-centered out- cessful engagement from the PCORI research portfolio. One
comes research (PCOR) and train individuals to participate in example included patient input in the enrollment script used
6 Dateline Federation | Spring 2018
