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Hi, my name is Zeph. I’m an adult diagnosed autistic and I’m a steering committee member of the UVM Autism Collaborative. On behalf of the UVM Autism Collaborative and the University of Vermont, I’d like to welcome you to PCOR Training. PCOR or P, C, O, R stands for Patient Centered Outcome Research. Today we’re going to find out why is PCOR important? What is PCOR and how do you do PCOR? PCORI, P, C, O, R, I is the Patient-Centered Outcomes Research Institute.

Hello, I’m Nakela Cook, executive Director of the Patient-Centered Outcomes Research Institute better known as PCORI. PCORI was established in 2010 to fund research that helps patients and those who care for them make better informed decisions about the healthcare choices they face every day.

PCORI is unique. It is the country’s leading research organization dedicated to putting patients at the center of research. We do this by funding research that compares one treatment or intervention to another, to help patients and those who care for them decide the better option given their needs and preferences.

 In our first 10 years, we invested more than 2.8 billion dollars to fund more than 800 research and research related projects on a wide range of conditions. PCORI has engaged with thousands of patients, caregivers, clinicians, payers, purchasers and the broader healthcare community to ensure all voices are heard. These individuals inform our work and help shape and guide the research we fund. We believe that it is vital for patients to be engaged as partners throughout the research process, helping to prioritize research topics, design studies and share results. 

PCORI has been acknowledged as a leader in influencing the clinical research enterprise in the United States to be more patient-centered. Results from many PCORI funded projects are being published in major medical journals and helping to improve care. We believe it is essential to reduce the lag time between publication and useful results and their use and practice, which is why we are growing our dissemination and implementation program. With our support, numerous research teams are pursuing innovative ways to promote the uptake in use of findings from their completed projects within healthcare and communities. 

Since our establishment under the Affordable Care Act, PCORI continues to meet our congressional mandate to fund and support patient-centered outcomes research with meaningful health impact. In December of 2019, Congress reauthorized PCORI for another 10 years of funding with broad bipartisan support. As PCORIs Executive Director, I am committed to advancing our mission to help people make informed healthcare decisions and to improve healthcare delivery and outcomes by producing and promoting high integrity, evidence-based information.

This project is funded through a PCORI Eugene Washington Engagement Award, number 24096. For more information, you can go to https://www.pcori.org/ 

Patient-centered outcome research is where patients are included in research teams, where patients are equal team members and helps patients make healthcare decisions. Comparative effectiveness research or CER is a type of research that compares two or more treatments to help patients make decisions. The goals of PCOR and CER research are to improve quality of life, keep people healthy, support people with health conditions, and choose treatment options. PCOR/CER research teams include patients, parents, doctors, allies, and others. 

There are seven steps of research. We’re going to go through each step briefly. The first step is to choose a research question. Number two, plan how to do the research. Number three, find a way to pay for the study. Number four, find people to participate in the study. Number five, do the study and collect the data. Number six, analyze the data and write the results. Number seven, understand and share the results. Research partners can be involved in any or all of these seven research steps.

 So how do you go about finding a PCOR/CER research question? First of all, you can get your question from the community. Then you need to determine if an answer already exists and is new research needed? 

So let’s take a look at a research question and see if we can identify the PICOT elements and the question. The question starts out; Would autistic young adults be more satisfied with their first visit to a doctor for adults if the doctor has training to make visits better for autistics, compared to a doctor who doesn’t have training?

PCOR is about you, and PCOR is for you. PCOR is research that’s done with community partners. This is why we need you. Question; What skills and expertise are you excited to bring to autism research?

 If you’re watching the video format of this training, you’re done now, congratulations. We’re glad to have you with us in the study. The next thing you’ll need to do is scroll down to the next section of the website, click on record completion of your PCOR training, open up the form, put your name in, click submit and you’re all done. We can’t wait to see you in the focus groups.