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to recruit research participants from hard-to-reach populations. PCORI is applying the principles and traditions of community
Patients weighed in on the language to make it more under- involvement observed in parallel fields, such as community de-
standable to people of all reading levels. Because of the patient velopment, political activism and civic engagement. Research-
engagement in the planning process, there was a significant ers eagerly seek innovation in the field to more quickly deter-
and quantifiable increase in the project recruitment rate. This mine effective interventions and treatments for end users.
example alluded to general activities and practices that lead to
successful and sustainable engagement, including creating a In respect to the HFA community, PCORI is funding research
safe space for sharing, ensuring materials are lay accessible and around bleeding and blood disorders as well as pain manage-
equalizing the playing field between researchers and stakehold- ment. Visit pcori.org to learn more about PCORI’s research
ers. portfolio and future funding opportunities.

PCORI and other funders recognize that conducting meaning- The demand for patient and stakeholder perspectives will only
ful patient and stakeholder engagement comes with challeng- continue to grow. Anyone can get involved in research and help
es, such as consensus building and buy-in from diverse com- the research culture continue to shift toward patient and care-
munities. Many patients struggle through the growing pains giver centeredness. HFA Pride Project will continue to educate
of integrating their perspective in the planning, conduct and and equip the bleeding disorder community to become more
dissemination of research. These challenges may delay project active in PCOR to ensure that research is relevant, useful and
milestones. In response, PCORI and other organizations have valuable.
developed tools and resources to help researchers better initi-
ate and sustain stakeholder partnerships in their work. One ex- Research reported in this article was partially funded through
ample is the PCORI Engagement Rubric, which provides guid- a Patient-Centered Outcomes Research Institute (PCORI)
ance on facilitating and maintaining engagement throughout Award (4349-HFA). The views, statements, and opinions in this
the course of a research project. article are solely the responsibility of the authors and do not
necessarily represent the views of the Patient-Centered Out-
comes Research Institute (PCORI), its Board of Governors or
Methodology Committee. n n

Your dreams. Our dedication. Alex
Hemophilia A
For over 60 years we have been inspired by people like you. Massachusetts
We continue to work as tirelessly as we did in the very
beginning, with unwavering focus on our ultimate goal: a life
full of dreams and free of bleeds.

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