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Displaying 1 - 17 of 17 results
Community Activist's Work Influenced by Service on PCORI Advisory Panel
Blog
My time on the PCORI Patient Engagement Advisory Panel (PEAP), as both a member and chair from 2017 to 2020, has had a tremendous impact on my thinking about patient…
Study Makes Strides in Improving Parental Mental Health
Blog
Every time a parent leaves our neonatal intensive care unit (NICU) to take their child home, we are asking them to do superhuman things. At Children’s National Hospital, the tasks…
Advisory Panel Experience Informs Perspectives on Health Disparities
Blog
Providing equitable care is my passion, but it’s a challenge when patients span two different worlds in the same state. I care for patients as a pediatric urologist at Seattle…
Diverse Backgrounds and Career Levels Are Key to Robust Advisory Panels
Blog
What does it take to design and conduct a successful study in today’s research landscape? At PCORI, we know part of the answer lies in listening to the voices of…
Sharing Messages of Engagement in Health from Montana's Crow Indian Nation
Blog
It is devastating for anyone to lose somebody, especially when that person is a child. When my young, twin daughter received the diagnosis of stage IV neuroblastoma, a cancer of…
Patient Peer Review, PCORI Style
Blog
The Patient-Centered Outcomes Research Institute (PCORI) is a unique organization that, as its name implies, engages patients in all its work. One aspect of that work is peer review, which…
PCORI and RAND Project to Evaluate Measures of Patient and Stakeholder Engagement
Blog
At PCORI, we have made great strides in making the case for engagement in research, and in showing practical ways to incorporate patients and other stakeholders seamlessly into research teams…
PCORI's Continued Commitment to Researching Rare Diseases
Blog
It’s been an eventful year for Scott Berns, MD, MPH. In 2019, Berns and his wife, Leslie Gordon, MD, PhD, were keynote speakers at the PCORI Annual Meeting. Then, in…
How I Cured My Rare Disease
Blog
Editor's Note: The views expressed here are those of the author and not necessarily those of PCORI. There are an estimated 25 to 30 million rare disease sufferers in the…
PCORI-Funded Study Provides Evidence about Health of Transgender Women
Blog
One of PCORI’s core priorities is funding research that can improve the health of underserved populations. That includes people who are transgender—an umbrella term describing individuals whose gender identity differs…
Helping Patients with Atrial Fibrillation Make Treatment Decisions
Blog
The American Heart Association and PCORI are excited to announce a major step in a multiyear partnership to identify and fund cardiovascular health research that will make a difference in…
The Importance of the Patient Voice
Blog
I was a shy child, but somewhere along the way I found my voice. Perhaps it was because of the countless times my parents told me to speak up for…
Drawing on Mental Health "Experts-by-Experience"
Blog
An estimated 43.6 million American adults—nearly one in five—have mental illness. Anxiety and mood disorders, including depression, are the most common forms. While these conditions are usually treatable, clinicians often…
Taking the Confusion out of Breast Cancer Screening
Blog
At its core, screening for breast cancer aims to save lives. The idea is intuitively attractive: Find a tumor early, before the disease becomes more serious, and some combination of…
In the Navajo Nation, a Focus on Health Data
Blog
Native Americans have the highest rate of diabetes of all US racial and ethnic groups. Around 16 percent of American Indian and Alaska Native adults have been diagnosed with that…
A Multifaceted Disease Requires a Patient-Centered Response
Blog
In 1986, I began experiencing bouts of numbness, fatigue, and lack of coordination on my left side. Those symptoms launched my 13-year journey toward a diagnosis of multiple sclerosis, or…
How Patient-Centered Outcomes Research Helps Families With Rare Diseases
Blog
Despite the name, "rare diseases" affect 30 million Americans. And their impact is severe—some of these illnesses have no effective treatment, and many are debilitating and life threatening. Yet each…
