HERSHEY, Pa. -- Which health outcomes really matter to patients? That’s the question the PaTH Network is starting to investigate with the help of nearly $7 million in funding from the Patient-Centered Outcomes Research Institute (PCORI), a nonprofit created through the Patient Protection and Affordable Care Act.
Four major university health systems — Penn State, University of Pittsburgh, Temple University and Johns Hopkins University — make up the PaTH Network. It’s one of 29 health data networks across the country and a coordinating center, collectively known as PCORnet, funded by PCORI.
PCORI’s mission is to help patients, their caregivers and health care providers make informed health care decisions based on outcomes that are relevant to those living with a particular condition. That means designing studies that track these patient-centered outcomes.
“It’s traditionally been the researchers who have determined what the outcomes should be in studies,” said Dr. Cynthia Chuang, professor of medicine and public health sciences and Penn State’s lead principal investigator on the project. “For a long time, that really seemed to make sense, until you think about: How do we know that these are the outcomes that really matter, and who should the outcomes matter to? When you think about it that way, it should be the patients who say, ‘Having my condition, these are the things that are most important to me.'"
While researchers typically focus on scientific measures like lab values, Chuang said, patients might be more focused on their quality of life, whether or not they can walk without using a walker or how they can take fewer medications.
Learn more about this project in this Penn State Medicine article.