What is PCORI? and Why should we care about it?

PCORI is the Patient Centered Research Institute created by the Affordable Care Act.

“Unfortunately, traditional medical research, for all of the remarkable advances in care it produces, hasn’t been able to answer many of the questions that patients and their clinicians face daily. And even when reliable information does exist, it’s not always available to patients, or those who care for them, in ways they can understand or use most effectively.

PCORI was established to help address these challenges. Our job is to close the gaps in evidence needed to improve key health outcomes. To do this, we identify critical research questions, fund patient-centered comparative clinical effectiveness research, or CER, and disseminate the results in ways that the end-users of our work will find useful and valuable.” (www.pcori.org)

So, PCORI funds research with patients in mind. What do patients want? What do patients want studied? PCORI also looks to patients to be involved in research in a number of ways. PCORI looks for patient involvement in developing research questions, providing feedback to the research team during the study, helping to recruit people to participate in the study, and working with the research team to disseminate the results to patients.

Your National Fibromyalgia & Chronic Pain Association President, staff, and volunteers have been invited to participate in many PCORI activities, including a round table that examined questions patients want studied about opioids and chronic pain – from our perspective as chronic pain patients. Researchers have approached us to work with them to help provide the patient’s voice in pain related research.

Why is this important to us as people who live in pain?

PCORI listens to patients. Therefore can influence what researchers will research. As people who live with chronic pain, we all have an opportunity to have researchers research prevention and interventions that will help find what works to cure or lessen our pain. And we will be informed of the results of that research and how it can help our pain.

How can I help?

As a fibromyalgia and/or chronic pain patient, you can get more involved in PCORI’s work. You can go to PCORI’s website and suggest a research question you would like studied. You can volunteer to become a patient reviewer of grant proposals. Patient reviewers look at how the proposals incorporate patient engagement. You can attend a PCORI webinar. You can get on PCORI mailing lists so you can stay informed and get involved in new opportunities as they arise. You can find the website at www.pcori.org