Interventions to improve system-level coproduction in the Cystic Fibrosis Learning Network

Autor: Rachel Gordon, Lillian O’Leary, Gregory Sawicki, Don B Sanders, David Miller, Peter J Murphy, Michael Seid, John Dickinson, Mary Lester, Catherine Hopkins, Adrienne Savant, Rebekah Brown, Preeti Sharma, Christian Merlo, Michelle Roberts, Kathryn A Sabadosa, David Hansen, Peter Michelson, Amy Filbrun, Jordan Dunitz, Christopher M Siracusa, Thida Ong, Stacy Bichl, Ahmet Uluer, Joanne Cullina, Michael Powers, Rhonda List, Lindsay Somerville, Lauren Williamson, Dana Albon, Hossein Sadeghi, Clement Ren, Thomas Keens, Nicholas Antos, Fadi Asfour, Mike Price, Kristen Nowak, Robert Balk, Erin Moore, Prigi Varghese, Cori Daines, Glenda Drake, Amy Lucero, Amanda Sharpe, Lindsey McMahon, Meghan Murray, Meghana Sathe, Traci Liberto, Rachel Linnemann, Pornchai Tirakitsoontorn, Maivy Sou, Michael Schechter, Andrea Molzhon, Karen Wunschel, Lisa A Mullen, Kyle Traver, Travis Burgett, Alex Gifford, Nicola Felicetti, Heidi Dolan, Tracey Gendreau, Danielle Beachler, Shine-Ann Pai, Stephanie Robbins, Ben McCullar, Lauren Mitchell, Andrew Scaljon, Stefanie Rushing, Golnar Raissi, Bean Corcoran, Michelle Prickett, Rachel Nelson, Stacy Allen, Lisa Greene, Sara Renschen, Betsy Price, Catherine Kier, Teresa Carney, Sandy Corr, Barbara Leyva, Jillian Salvatore, George M Solomon, Julianna Bailey, James Lawlor, Samya Z Nasr, Rebekah Raines, Catherine Enochs, Kristen Jesse, Jonathan Flath, Mackenzie Wharram, James Tolle, Susan Eastman, Nauman Chaudary, Mahsa Farsad, Kimberly Wingo, Kathryn Moffett, Erin Brozik, Paige Krack, Kevin Martin, Laura Roth, Joshua Wang, Sarah Dykes, Erin Newbill, Misty Thompson, Danielle Poulin, Breck Gamel, Srujana Bandla, David W Davison, Lindsay Silva, Raouf Amin, Maria Britto, Anna Saulitis, Kate Barnico, Cindy Murphy, Amanda Lemieux, Georgia Dangel, Melanie Lawrence, Danielle Goetz, Danielle Woerner, Megan Whelan, Katelyn Violanti, Susan Attel, Alexia Hernández Cargal, Kelly Clute, Olivia Ries, Susan Gage, Bridget Kominek, Kristin Lawrence, Megan Martin, Jessica Roach, Errin Newman, Phillip Vaden, Esther Giezendanner, Marsha Triana, Sujal Rangwalla, Meghann Weil, Randy Hunt, Emily Walker, Caroline Starnes, Kendra Adderhold, Megan Barker, Johanna Zea-Hernandez, Beth Debri, Ann Kaiser, Cindy Brown, Pi Chun Cheng, Jana Yeley, Laura Jay-Ballinger, Julian McConnie, Meghana Malapaka, Perry Aulie, Ginger Birnbaum, Cynthia Driskill, Janerisa Encarnacion, Amanda Oswald, Stephanie Fullmer, Anthony Fashoda, Laura Steinhaus, Maureen Tinley, Jame’ Vajda, Janine Cassidy, Mey Lee, Megan Akers, Susan Whitmore, Christian Santaniello, Robert Abdullah, Bryan Garcia, Cameron Crenshaw, Kandice Amos, Veronica Indihar, Lisa Shively, Anissa Hostetter, Angela Oder, Brandi Morgan, Kayla Hubley, Deborah K Froh, Holly Carroll-Owen, Lauren Miller Ahrens, Brielle Evangelista, Lucy Gettle, Tracie O'Sullivan, Autumn Bonstein, Stacey Miller, Angela Bender, Billie Jo Bennett, John Palla, Cathy O'Malley, Maria Dowell, Allison Fitch-Markham, Chladd Ford, Carolyn Heyman, Terri Laguna, Debbie Benitez, Lynn Fukushima, Martha Markovitz, Adupa Rao, Gregory Storm, Vai Jun Lam, John Mercer, Cori Muirhead, Jeff Gold, Aaron Trimble, Gopal Allada, Wendy Palmrose, Sue Sullivan, Kim Keeling, Rob Shradar, Jill Fliege, Heidi Klasna, Janelle Sorensen, Stacy Millikan, Joe Poler, Jill Rollins, Sandy Wahl, Cristy Batten, Laura Romero, Whitney Gore, Kimberly Morse, Rocio Munter, Danieli Salinas, Sylvia Sanchez, Virginia Anderson, Jami Dunn, Stephanie Gamble, Hector Gutierrez, Kelli Lachowicz, Isabel Lowell, Cathy Mims, LaShonna Stodghill, Gabriela Oates, Amanda Phillips, Linda Russo, Staci Self, Julie Desch, Ilene Hollin, Emily Kramer-Golinkoff, Pamela Mertz, Sarah Gomez, Nancy Griffin, Drew Warmin

Publikováno v: BMJ Open Quality, Vol 13, Iss 3 (2024)

Background Coproduction is defined as patients and clinicians collaborating equally and reciprocally in healthcare and is a crucial concept for quality improvement (QI) of health services. Learning Health Networks (LHNs) provide insights to integrate

Externí odkaz: https://doaj.org/article/65153dab72834c8d85fcdc291e321282

A survey: Understanding the health and perspectives of people with CF not benefiting from CFTR modulators

Autor: Emily Kramer‐Golinkoff, Amanda Camacho, Liza Kramer, Jennifer L. Taylor‐Cousar

Publikováno v: Pediatric Pulmonology. 57:1253-1261

While the advent of cystic fibrosis transmembrane conductance regulator (CFTR) modulator use has improved daily life and long-term prognosis of CF for many with approved CFTR mutations, approximately 10% of people with CF (pwCF) have only symptomatic

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::accbede3cc8fc63a98f7dd88d650d30d
https://doi.org/10.1002/ppul.25859

Tennyson’s Poems: New Textual Parallels. Edited by R. H. Winnick

Autor: Emily Kramer

Publikováno v: Essays in Criticism. 71:237-242

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_________::8c30708e4982b8b2d5727ed9b525b506
https://doi.org/10.1093/escrit/cgab003

Geosocial Networking App Use Associated With Sexual Risk Behavior and Pre-exposure Prophylaxis Use Among Gay, Bisexual, and Other Men Who Have Sex With Men: Cross-sectional Web-Based Survey (Preprint)

Autor: Laurel Gibson, ANGELA BRYAN, Emily Kramer

BACKGROUND In the United States, geosocial networking (GSN) apps (ie, mobile dating apps) have become central to dating and sexual interactions in recent years. Among gay, bisexual, and other men who have sex with men (GBM), these apps play an import

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_________::355c86bc03ec425efe0638a01f830af8
https://doi.org/10.2196/preprints.35548

Woman Races to Find a Cure for Her Own Disease.

Autor: Sifferlin, Alexandra

Publikováno v: Time.com. 1/7/2016, pN.PAG. 1p.