PCORI - Formed in 2010 through the Affordable Care Act, PCORI (Patient-Centered Outcomes Research Institute) is an independent, non-profit health research organization that funds and shares findings correlating the effectiveness of the various choices patients have when selecting their care. PCORI’s vision is to provide the patient with the information they need to make decisions that bring about their desired health outcomes. PCORI funds comparative effectiveness research (CER) and PCORnet.  
 
PCORnet (National Patient-Centered Clinical Research Network) is a national patient data network that collects PCORnet is to improve the nation’s capacity to conduct comparative effectiveness research (CER). PCORnet brings together patients, care providers and health systems to improve healthcare and advance medical knowledge. With patients and researchers working -by-sidePCORnet.

How will PCORnet improve the nation’s ability to do CER?

Suppose a researcher and would like to compare two lupus treatments. How will you find patients to ask if they would like to participate in the study? With PCORnet, researchers will be able to search the identity-protected data to find the patients you are looking for.
For more information, visit pcornet.org.

Why is CER important to patients?

Suppose your coffee pot broke and you needed to replace it. You can fill libraries with easy to find and understand information comparing different models of coffee pots.

• What are your needs (desired outcomes) in a coffee pot?
• Do you want something that keeps coffee piping hot?
• Do you need to brew many cups at a time or single-serve?
• How quickly do you want the coffee to brew?
• Are you a connoisseur and always want the highest quality? No matter how long it takes?

The consumer has access to a wealth of information needed to select a coffee pot, but in the healthcare world of choosing a coffee pot, the patient would only be able to ask their doctor for advice on which coffee pot to select.

• What if what’s important to your doctor in a coffee pot is not relevant to you?
• Why is there so much information available in about something as trivial as a coffee pot and nothing available when making the choice about which medication to use?

Can We Use CER to Find the Best Care for Kids with Lupus?

What if we could find the best care for children with lupus just by studying how they do with routine care from their own doctor? Learn more about finding the best care for children with lupus.

What Does Research Mean to You?

Parents and patients were asked, “What is one word that comes to mind when you hear the word “research”? The larger the word, the more times it was mentioned. Over 25% of parents replied with the word “hope.” This is a powerful message as to the importance of research to those dealing with these diseases every single day.