Do You Know PCORI?

Last week I had the privilege of attending the yearly PCORI conference. PCORI stands for Patient-Centered Outcomes Research Institute. They are a government funded non-profit organization. They provide grants to organizations that include patients in whatever research they are doing. The patient must be involved in every aspect of the research. From the planning to the implementation to everything in between.

The purpose is to give patients like you, me, and caregivers more knowledge in making choices regarding our health and healthcare. If you want more information about PCORI you can find it here.

How I learned about PCORI

I first learned about PCORI at a National Psoriasis Foundation meeting. I was there to give my input on a variety of things from how psoriasis impacts us, to living daily with it, and the mental toll it can take as well as healthcare challenges. There were about 20 or so of us there in that meeting along with members of the NPF staff. After the meeting was finished, we learned that each of us would be listed as co-authors along with the NPF staff on a white paper. The meeting had been funded by PCORI. I would also learn that two of my fellow psoriatics in that meeting were already associated with PCORI. I sought out these two people I had known for quite some time and began asking them questions about PCORI. After I got home from that meeting I began looking into the organization and became a PCORI Ambassador about a week later.

On my second day at the PCORI conference we were told there were posters and presenters set up in another room. It was currently funded grants that were issued by PCORI. On hand would be the main person that was over the researcher to talk to us and answer any questions. Imagine my surprise when I came across another grant the National Psoriasis Foundation had received to investigate LITE Therapy. It was a comparison of the effectiveness between light therapy being offered in a medical office and light therapy being offered at home.

Studies funded by PCORI

For those of you who do not know what light therapy is it is a treatment for plaque psoriasis. However, light therapy is not offered everywhere. This study was conducted to evaluate if light therapy used in a person’s home could be as effective as a person using it in a medical office. It was proven that it could be just as effective which could lead patients that do not have access to light therapy an opportunity to use one in their home. If you would like to read more about this, you can find it here: The LITE Study.

I only listed two studies here that the National Psoriasis Foundation has conducted with crucial funds granted to them by PCORI. The first one highlighted what we patients living with psoriasis must contend with and the lack of healthcare we are afforded. The second one is Phototherapy or light study. I am sure there will be more funding grants given to the National Psoriasis Foundation in coming years as they try to give each of us better access to care. I am proud to say that I volunteer with both organizations and look forward to bringing my voice to each organization’s research opportunities.