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PRIDE Project Training
What are PCORI and CER?
By Wendy Owens, Staff
W hat is your preferred brand of ketchup, toothpaste, reported outcomes like PCOR and CER, it is a powerful combi-
clothing, or gasoline? It is probably the one that works nation that can result in the best application of treatments and
best for you, as in tastes best, makes your teeth white, fits your thus the best health outcomes.
form, or makes your car run smoothly. To figure out which prod-
ucts meet your needs, you most likely try a variety of options, PCOR and CER are two types of research you can participate in
ask friends and family for information on their experiences, directly to help improve your health outcomes and those of the
read articles online, and ultimately reach your own conclusion bleeding disorders community. Both types of research focus
of what works best for you. Yes, everyone does it; it’s called re- on patient-reported outcomes, specifically, “information that
search. Research is the systematic investigation into, and the comes from the patient about the status of a patient’s health
subsequent study of, materials and sources to establish facts condition without amendment or interpretation of the pa-
and reach conclusions. Now, HFA wants you to take your re- tient’s report by a clinician or anyone else.”i In other words,
search efforts a step further, and we are going to help you do it. your voice about your healthcare is important. By participating
in PCOR and CER, your voice is heard not only by taking a sur-
Recently, HFA was awarded a $250,000 funding contract vey or giving a blood sample but by developing research ques-
through the Eugene Washington PCORI Engagement Awards tions, conducting research, and analyzing and disseminating
program, an initiative of the Patient-Centered Outcomes Re- the results of the research. That’s right, with both PCOR and
search Institute (PCORI). The funds will support the Patient- CER, you are an important part of a research team.
centered Research for Innovation, Development, and Edu-
cation (PRIDE) Project through training and education of Comparative effectiveness research (CER) essentially asks the
bleeding disorder community stakeholders in patient-centered questions, “What works best? Is it X or Y?” CER is designed
outcomes research (PCOR) and comparative effectiveness re- to inform health-care decisions by providing evidence on the
search (CER). effectiveness, benefits, and harms of different treatment
options.ii Think about how you chose your preferred brand of
There are many types of research. Clinical research, for exam- ketchup, toothpaste, clothing, or gasoline. That was a process
ple, focuses on medications, devices, treatment regimens, and of comparing one or more items to answer the question “what
diagnostic products to determine their safety and effectiveness works best for me?”
for human use. Biological research can happen in a lab or out
in the field, with the goal of advancing our knowledge of liv- Patient centered outcomes research (PCOR) takes CER a step
ing organisms to develop solutions to human health problems. further and “helps people and their caregivers communi-
When these two types of research are combined with patient- cate and make informed health care decisions, allowing
their voices to be heard in assessing the value of health
care options.”iii The purpose of PCOR is to help stakeholders
in your healthcare—you, your doctor, your insurance company,
biopharmaceutical manufacturers, and policy makers—to make
informed health decisions. One of the goals of PCOR is to
advance the quality and relevance of evidence about how
health conditions, like a bleeding disorder, can be diagnosed,
treated, monitored, managed, and even prevented.
Challenges are abundant in research and PCOR and CER are
not exceptions. These include determining what the best meth-
ods are for conducting PCOR and CER, whether these methods
will be acceptable to all, and what the best way to disseminate
research results might be. We want you to help us and other
researchers determine which methods would work best for pa-
Fall 2017 | Dateline Federation 11
