Guest Blogs

Advisory Panel Experience Informs Perspectives on Health Disparities

Published: 
March 8, 2021
Author(s): 
Kathleen Kieran, MD, MSc, MME
Blog Topics: 
Advisory Panels
Guest Blogs
Providing equitable care is my passion, but it’s a challenge when patients span two different worlds in the same state. Kathleen Kieran, MD, MSc, MME I care for patients as a pediatric urologist at Seattle Children’s Hospital and at an Eastern Washington outreach clinic. I also mentor University of...
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Diverse Backgrounds and Career Levels Are Key to Robust Advisory Panels

Published: 
February 16, 2021
Blog Topics: 
Advisory Panels
Guest Blogs
What does it take to design and conduct a successful study in today’s research landscape? Kaleab Abebe, PhD, MA At PCORI, we know part of the answer lies in listening to the voices of those in academic and scientific communities. Through PCORI’s Advisory Panel on Clinical Trials (CTAP)—one of two...
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Sharing Messages of Engagement in Health from Montana's Crow Indian Nation

Published: 
January 26, 2021
Author(s): 
Alma McCormick
Blog Topics: 
Advisory Panels
Guest Blogs
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 the nerve cells, I couldn’t understand how a child could suffer from this awful disease. She lost her life in 1985. Alma...
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Patient Peer Review, PCORI Style

Published: 
December 14, 2020
Author(s): 
Kelly Vander Ley, PhD,
Rebekah Webb, MPA,
Marnie Colton, MFA
Blog Topics: 
Guest Blogs
Peer Review Blogs
Research
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 is traditionally the bastion of scientists and academics. PCORI peer review is different because it includes...
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How I Cured My Rare Disease

Published: 
February 25, 2020
Author(s): 
Doug Lindsay
Blog Topics: 
Advisory Panels
Guest Blogs
Research
Editor’s Note: The views expressed in this piece are those of the author and do not necessarily reflect the views of PCORI. There are an estimated 25 to 30 million rare disease sufferers in the United States. My name is Doug Lindsay, and I am one of them. This is my story.
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PCORI's Continued Commitment to Researching Rare Diseases

Published: 
February 25, 2020
Author(s): 
Scott Berns, MD, MPH
Blog Topics: 
Advisory Panels
Guest Blogs
Research
It’s been an eventful year for Scott Berns, MD, MPH. In September 2019, Berns and his wife, Leslie Gordon, MD, PhD, were keynote speakers at the PCORI Annual Meeting. Then, in November, Berns was elevated to Chair of PCORI’s Advisory Panel on Rare Disease. In observance of Rare Disease Day, on...
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Tough Choices: Changing Lives with Shared Decision Making

Published: 
August 2, 2019
Author(s): 
Melinda Kane, MS-HCM,
Ginny Meadows, MSHI, RN-BC, FHIMSS
Blog Topics: 
Guest Blogs
Research
Wendy Keller was a beloved sister, friend, mother, and grandma. At eight years old, she and her family emigrated to the United States from England. Wendy built a wonderful life – graduating from the University of Pittsburgh, becoming a physical therapist, marrying, and raising a family. She was a...
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Partnerships in Women's Health -- NPWH and PCORI

Published: 
July 25, 2019
Author(s): 
Beth Kelsey, EdD, APRN, WHNP-BC, FAANP,
Susan Rawlins, MS, APRN, WHNP-BC
Blog Topics: 
Guest Blogs
Research
As a professional membership organization for women’s health nurse practitioners (WHNPs), the National Association of Nurse Practitioners in Women’s Health (NPWH) is a leading voice for courageous conversations about women's health. NPWH champions state-of-the-science health care that holistically...
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Integrating Patient Input into Kidney Disease Research

Published: 
April 15, 2019
Author(s): 
Paul T. Conway,
Richard Knight, MBA
Blog Topics: 
Guest Blogs
Research
In 1969, six patients on dialysis at Kings County Hospital in Brooklyn formed a group to elevate kidney disease awareness, call for better educational resources, and create a community for patients living with chronic kidney disease. They met twice a week in the hospital ward—while hooked up to...
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Partnering on Patient-Centered Research for People with Kidney Disease

Published: 
March 14, 2019
Author(s): 
Lesa-kaye Holtham, MPH
Blog Topics: 
Guest Blogs
Research
Patient-centered chronic kidney disease research is needed to help patients and healthcare professionals answer many questions they have about the treatment options that best match patients’ individual life goals, preferences, and values. Since 2012, PCORI has funded 18 research studies that will...
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