by Megan Ritchey, SWHR Communications Intern
When patients and health care providers are forced to make health care decisions without sufficient evidence to inform them, the negative effects can be far-reaching. Undue financial burden, ineffective treatments and painful side effects are just a few consequences of limited health care information.
Nearly 10 years ago, Congress established the Patient-Centered Outcomes Research Institute (PCORI) to address this information gap by conducting quality health research focused on outcomes important to patients. Since then, PCORI has funded hundreds of studies comparing the effectiveness of different clinical options for a wide range of pressing health problems like cancer, opioid addiction, and heart disease.
At the Society for Women’s Health Research’s June policy meeting, Andrew Hu, director of public policy and government relations at PCORI, provided insight into how PCORI identifies topics and priorities for its research, as well as how the institute is advancing women’s health outcomes.
Hu emphasized the importance of PCORI’s engagement with community stakeholders in order to ensure its research benefits a wide range of patients. “We are conscious of the heterogeneity of patient populations, and this gets to why engagement is so important,” he said. “It helps direct us to where we should be looking, what types of questions we should be seeking to answer, and what types of outcomes we should be considering.”
PCORI’s research in women’s health areas serves as one example of its engagement with patient subpopulations. PCORI has invested about $240 million to fund 61 studies targeting conditions that specifically or more often affect women, in addition to dozens of projects focused on engaging more women in the research process.
For example, PCORI funded a study that examined the benefits and drawbacks of three uterine fibroid treatments to learn how well they delayed new or recurring symptoms and helped patients avoid follow-up treatments. Based on this research, PCORI funded a related project to update materials to assist patients and health care providers in making shared treatment decisions about fibroids. This work aligns with the goals of SWHR’s new science network that is dedicated to improving the lives of women with uterine fibroids, endometriosis and related conditions by addressing the gaps in research, diagnosis, treatment, and care.
PCORI and SWHR also share an interest in migraine. SWHR’s Migraine Network works to address the burden and stigma of migraine, a disease that predominantly affects women. PCORI has two ongoing projects related to migraine: The first compares two treatment options for those who have chronic migraine and overuse medication (a common occurrence in patients who have more frequent migraine attacks than their prescription was written for). The second compares two ways to help patients and health care providers talk about the treatment choices for long-term pain conditions such as migraine.
Because health conditions that exclusively or predominantly affect women — like uterine fibroids and migraine — are often stigmatized and have large information and research gaps, studies like PCORI’s could be beneficial to patients, health care providers, and stakeholders like SWHR, bringing us a step closer to eliminating these gaps.
PCORI’s 10-year authorization expires this September and it is seeking reauthorization in order to continue its research and efforts to improve outcomes for patients — including those groups, like women, who have often been overlooked or ignored in traditional research. “We want to make sure that our conversations continue,” Hu said.