Engagement Blogs

Booth Captures Powerful Stories from Patients, Caregivers

Published: 
July 16, 2019
Blog Topics: 
Engagement Blogs
PCORI Annual Meeting
Research
A woman with scoliosis, a man living with HIV, and a wife threading the line between spouse and caregiver. These individuals and hundreds like them have shared their experiences in the MyPaTH Story Booth, and so can you at the 2019 PCORI Annual Meeting . The Story Booth is like a traveling studio...
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Teens and Families Trained to Engage with Researchers in PCORI-Funded Project

Published: 
May 23, 2019
Blog Topics: 
Engagement Blogs
Research
Youth are not often engaged as partners in traditional research, and even in the kind of patient-centered outcomes research to which PCORI is committed, youth are less likely than adults to contribute.
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Patient Engagement Is Critical to Producing Useful, Relevant Research

Published: 
March 14, 2019
Author(s): 
Laura Forsythe, PhD, MPH,
Kristin L. Carman, PhD, MA,
David Hickam, MD, MPH
Blog Topics: 
Engagement Blogs
Evaluating Our Work
Research
Since our founding nearly 10 years ago, PCORI has emphasized the importance of engagement—the meaningful involvement of patients, caregivers, clinicians, insurers, and others across the healthcare community in every aspect of the research process—as a way to make health research more relevant,...
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To Advance Public and Patient Engagement in Research, We Must Demonstrate Its Value

Published: 
December 17, 2018
Author(s): 
Kristin L. Carman, PhD, MA,
Laura Forsythe, PhD, MPH
Blog Topics: 
Engagement Blogs
Research
PCORI is proud to be a leader in urging more patient and public engagement in health research. That’s why we require it in everything we do, including the studies we fund. And we’re pleased to see that others in the healthcare community are also increasingly advancing this work. But we also know...
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Putting PCORI's Updated Engagement Plan Template to Work in Research

Published: 
September 24, 2018
Author(s): 
Julie Kennedy Lesch, MPA,
Lisa Stewart, MA
Blog Topics: 
Engagement Blogs
Application Process
At PCORI, we know that successful engagement with partners begins with a well-thought-out plan. That’s why in addition to describing how patient and other stakeholder partners have been a part of planning a study, applicants for research funding are also asked to share an outline of how partners...
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Engaging People Who Are Hard to Reach

Published: 
August 28, 2018
Author(s): 
Clover Ulrich,
Yasmeen Long, MA,
Ivey Wohlfeld,
Blog Topics: 
Engagement Blogs
The Eugene Washington PCORI Engagement Awards are designed to help build a national community of patients, caregivers, clinicians, researchers, and other healthcare stakeholders who will advance patient-centered comparative clinical effectiveness research. The goal is to increase the usefulness of...
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Patients Helping Patients Navigate Serious Mental Illness

Published: 
June 12, 2018
Author(s): 
Sonya Ballentine,
Marilyn Perez-Aviles
Blog Topics: 
Research
Engagement Blogs
Guest Blogs
Around one in six adults in the United States has a mental health disorder. Minority populations are more at risk for serious psychological distress but only half as likely to receive mental health treatment as non-Hispanic whites. And various studies suggest that those with a serious mental...
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Connecting Patient and Family Groups with Health Researchers

Published: 
June 11, 2018
Author(s): 
Lia Hotchkiss, MPH,
Ivey Wohlfeld
Blog Topics: 
Research
Engagement Blogs
At PCORI, we notice when organizations put patients and their caregivers front and center in health care. One such way organizations are doing this is by establishing patient and family advisory councils. These councils work to improve delivery of health care. They think of healthcare professionals...
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PCORI's LGBT Health Portfolio Works to Address Major Disparities

Published: 
May 11, 2018
Author(s): 
Mira Grieser, MHS,
Mari Kimura, PhD, MS
Blog Topics: 
Engagement Blogs
Research
The lesbian, gay, bisexual, and transgender (LGBT) population faces unique mental and physical health challenges. Perceived stigma and a lack of cultural competence from healthcare providers can be additional challenges among transgender individuals, a group that has been largely overlooked in...
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Changing the Landscape of Rare Disease Research

Published: 
February 28, 2018
Author(s): 
Vanessa Boulanger, MSc
Blog Topics: 
Engagement Blogs
Guest Blogs
A rare disease, by definition, affects fewer than 200,000 individuals in the United States. Up to 30 million Americans have a rare disease, and most conditions are poorly understood. The National Organization for Rare Disorders (NORD), the voice of the rare disease community, and PCORI are working...
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