Guest Blogs

Patient Peer Review, PCORI Style

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...
Read more

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.
Read more

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...
Read more

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...
Read more

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...
Read more

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...
Read more

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...
Read more

Spotlighting Rare Disease Research

Published: 
February 28, 2019
Author(s): 
Scott Berns, MD, MPH,
Matt Cheung, PhD, RPh
Blog Topics: 
Guest Blogs
Research
A rare disease, by definition, affects fewer than 200,000 individuals in the United States. But combined, up to 30 million Americans have a rare disease, and most conditions are poorly understood. That combined burden is why one of PCORI’s six multi-stakeholder advisory groups is the Advisory Panel...
Read more

Partnering to Help People with Obesity Better Understand Their Surgical Options

Published: 
October 30, 2018
Author(s): 
David Arterburn, MD, MPH,
Neely Williams, MDiv
Blog Topics: 
Guest Blogs
PCORI Annual Meeting
PCORnet Blogs
Research
Nationwide, 93 million adults and one in five adolescents have obesity. But the concerns they face go well beyond excess weight. They are at greater risk for heart disease, type 2 diabetes, and cancer, among other health problems. People with obesity have numerous options to consider when looking...
Read more

Choosing My Care on My Terms

Published: 
October 25, 2018
Author(s): 
Amy Berman, RN
Blog Topics: 
Guest Blogs
PCORI Annual Meeting
Research
Just one year after celebrating my 50th birthday, I was walking down a New York City street with my mother on a misty, gray November day when my phone rang. My life was wonderful up to that point, but looking back, I can see that the weather was an appropriate backdrop for the news I was about to...
Read more