PCORI - A Focus on Patient Centered Research

Recently, I had the privilege of being a patient reviewer for the Patient-Centered Outcomes Research Institute (PCORI). Due to a confidentiality agreement I made when I agreed to be a reviewer, I can’t discuss details of the process. I would though like to share more information about PCORI and make patients aware that researchers are listening when we voice concern over not having enough information to make an good decision.  PCORI insures that there is strong science to support the decisions we have to make.

PCORI was authorized by Congress to provide patients with evidence based research results. PCORI funds what is known as comparative effectiveness research (CER). “Comparative effectiveness research is designed to inform health-care decisions by providing evidence on the effectiveness, benefits, and harms of different treatment options.”(The US Department of Health and Human Services) This information enables patients and their health care providers to understand the science and make the best prevention, treatment and care decisions.

 PCORI’s vision is also focused on the patient.

“Patients and the public have information they can use to make decisions that reflect their desired health outcomes.”

Research that PCORI funds answers these questions:

1. “Given my personal characteristics, conditions and preferences, what should I expect will happen to me?”

2. “What are my options and what are the potential benefits and harms of those options?”

3. “What can I do to improve the outcomes that are most important to me?”

4.  “How can clinicians and the care delivery systems they work in help me make the best decisions about my health and healthcare?”

Answers to these questions are so important. I can tell you that during my treatment for ovarian cancer I wish there was more information to help me make treatment decisions especially when I recurred and there was no “Gold Standard” of care.

PCORI is interested in having patients and stakeholders involved in a variety of ways. Please check out the “Get Involved” page of their website for more information.( http://www.pcori.org/get-involved/landing/). 

Researchers interested in applying for PCORI funding should check their funding opportunities page (http://www.pcori.org/funding-opportunities/funding-center/). 

If you(patients , stakeholders or researchers)  have questions about PCORI  feel free to e-mail them at info@pcori.org .

I came home from the PCORI review happy to see patients working with researchers and stakeholders to make a difference in the lives of others.

Dee

Every Day is a Blessing!