Dear Addy: PRIDE Project

Dear Addy,
I have heard of HFA’s PRIDE Project but am not clear on how I can participate and what I can learn from my participation. As a bleeding disorders community member, what do I need to know about the project and can I really do research?
Signed,
Researching Research

Dear Researcher,
You do research all the time but might not think of your investigations as such. When you ask is X product better than Y product, and you figure out the answer by comparing the two, you are doing research. In the PRIDE Project, HFA wants to hone your research skills and show you how to apply those skills to improve your health outcomes and those of other members of the bleeding disorders community. You do not have to have a bleeding disorder to participate in the PRIDE Project.
Recently, HFA won a $250,000 funding award through the Eugene Washington PCORI Engagement Awards program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). The funds support the Patient-centered Research for Innovation, Development, and Education (PRIDE) Project via training and education of bleeding disorder community stakeholders in patient-centered outcomes research (PCOR) and comparative effectiveness research (CER).
PCOR and CER are two types of research you can do to help improve your health outcomes and those of the bleeding disorders community. Both types of research focus on patient reported outcomes. By participating in PCOR and CER projects, your voice is heard not only by taking a survey or giving a blood sample but by developing research questions, conducting research, and analyzing and disseminating the results as an integral part of a research team.
HFA’s PRIDE Project wants you to be directly involved in PCOR and CER research efforts through training and introducing you to researchers at universities, institutes, insurance companies, biopharmaceutical manufacturers, and others who undertake PCOR and CER.
HFA is providing training in PCOR and CER for the next couple of years online and at in-person meetings like our TEACH Immersions, our annual symposium, and local member organizations’ meetings. To learn more about what PCOR and CER are, please watch HFA’s webinar online. For more information on PRIDE Project events, please check out the PRIDE Project web page.
Sincerely,
Addy
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HFA frequently receives questions from the bleeding disorders community related to advocacy issues. The questions often impact the entire community. In an effort to reach the largest audience possible with our responses to these widely applicable questions, HFA developed “Dear Addy.” Questions submitted to this column are edited in order to protect privacy and should be considered educational only, not individual guidance.