Results 11 to 20 of about 296,381 (341)

Design of and Early Insights From a Generalized Myasthenia Gravis Patient Engagement Research Council [PDF]

Health Science Reports
Background and Aims An exploratory focus group study was conducted to better understand the needs of patients living with generalized myasthenia gravis (gMG).
Gabrielle Geonnotti, Jacqueline Pesa, Wesley Peters, Melina Taylor, Zia Choudhry, Oluyemisi Falope, Marquetta Price, Lucy Baxter, Bruce West, Lisa Shea   +9 more
doaj   +2 more sources

Patient engagement in fertility research: bench research, ethics, and social justice

Research Involvement and Engagement, 2021
Plain English summary Patients are increasingly becoming involved in all stages of the research process. Patient and public involvement has been shown to answer questions that matter to patients, increase enrollment in studies, and improve the spread of ...
Perry R. Fleming, Makayla M. Swygert, Coen Hasenkamp, Jessica Sterling, Ginny Cartee, Rebecca Russ-Sellers, Melanie Cozad, Renee J. Chosed, William E. Roudebush, Ann Blair Kennedy   +9 more
doaj   +1 more source

Patient-centered benefit-risk analysis of transcatheter aortic valve replacement [version 5; peer review: 2 approved, 1 not approved]

F1000Research, 2021
Background: Aortic stenosis (AS) treatments include surgical aortic valve replacement (SAVR) and transcatheter aortic valve replacement (TAVR). Choosing between SAVR and TAVR requires patients to trade-off  benefits and risks.
Kevin Marsh, Natalia Hawken, Ella Brookes, Carrie Kuehn, Barry Liden   +4 more
doaj   +1 more source

A patient‐led, peer‐to‐peer qualitative study on the psychosocial relationship between young adults with inflammatory bowel disease and food

Health Expectations, 2022
Background Inflammatory bowel diseases (IBDs) are chronic gastrointestinal diseases that negatively affect the enjoyment of food and engagement in social and cultural gatherings.
Jenna Rines, Kim Daley, Sunny Loo, Kwestan Safari, Deirdre Walsh, Marlyn Gill, Paul Moayyedi, Aida Fernandes, Nancy Marlett, Deborah Marshall   +9 more
doaj   +1 more source

Co‐building a training programme to facilitate patient, family and community partnership on research grants: A patient‐oriented research project

Health Expectations, 2023
Introduction Patient engagement in patient‐oriented research (POR) is described as patients collaborating as active and equal research team members (patient research partners [PRPs]) on the health research projects and activities that matter to them. The
Ingrid Nielssen, Sadia Ahmed, Sandra Zelinsky, Brian Dompe, Paul Fairie, Maria J. Santana   +5 more
doaj   +1 more source

How to analyze and link patient experience surveys with administrative data to drive health service improvement -- examples from Alberta, Canada

International Journal of Population Data Science, 2022
The ability of hospitals and health systems to learn from those who use its services (i.e., patients and families) is crucial for quality improvement and the delivery of high-quality patient-centered care.
Kyle Kemp, Paul Fairie, Brian Steele, Maria Santana   +3 more
doaj   +1 more source

Experiences of an HCV Patient engagement group: a seven-year journey

Research Involvement and Engagement, 2021
Historically, few publications exist where patient engagement in clinical studies is a driving force in study design and implementation. The Patient Centered Outcomes Research Institute (PCORI), established in 2010, employed a new model of integrating ...
UNC Chapel Hill HCV Patient Engagement Group, Scott Kixmiller, Anquenette P. Sloan, Summer Wadsworth, Finton Brown, Lourdes Chaney, Larry Houston, Kim Thomas   +7 more
doaj   +1 more source

Youth engagement in research: exploring training needs of youth with neurodevelopmental disabilities

Research Involvement and Engagement, 2023
Background Authentic researcher-youth partnerships in patient-oriented research (POR) where the research responds to the needs expressed by youth themselves are essential to make research meaningful.
Samantha Yimeng Dong, Linda Nguyen, Andrea Cross, Amanda Doherty-Kirby, Jessica Geboers, Dayle McCauley, Alice Kelen Soper, Amanda St. Dennis, Danny Steeves, Natasha Trehan, Jan Willem Gorter   +10 more
doaj   +1 more source

Patient-centered benefit-risk analysis of transcatheter aortic valve replacement [version 4; peer review: 2 approved]

F1000Research, 2020
Background: Aortic stenosis (AS) treatments include surgical aortic valve replacement (SAVR) and transcatheter aortic valve replacement (TAVR). Choosing between SAVR and TAVR requires patients to trade-off  benefits and risks.
Kevin Marsh, Natalia Hawken, Ella Brookes, Carrie Kuehn, Barry Liden   +4 more
doaj   +1 more source

Unlocking sociocultural and community factors for the global adoption of genomic medicine

Orphanet Journal of Rare Diseases, 2022
Advances in genomic sequencing and genetic testing are increasingly transforming the diagnosis and treatment of diseases—specifically, rare diseases. However, the application and benefit of such technologies remain inequitable globally.
Lynsey Chediak, Nicola Bedlington, Ayesha Gadson, Alastair Kent, Aiedah Abdul Khalek, Luke Rosen, Malisa Rust, Mohd. Farooq Shaikh, Meng Yoe Tan, Samuel Agyei Wiafe, Gareth Baynam, Charles A. Steward   +11 more
doaj   +1 more source