Development and evaluation of a virtual patient-centered outcomes research training program for the cystic fibrosis community

Plain English Summary Cystic fibrosis (CF) is a rare, genetic disease; meaning people are born with the disease and have it throughout their lives. CF is a multi-system disease, primarily affecting the respiratory system. Daily care for people with CF (PwCF) includes taking many medications and brea...

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Autores principales:	Emily M. Godfrey, Erin K. Thayer, Laura Mentch, Traci M. Kazmerski, Georgia Brown, Molly Pam, Morhaf Al Achkar
Formato:	article
Lenguaje:	EN
Publicado:	BMC 2021
Materias:	Cystic fibrosis Co-development Education Evaluation Patient-centered outcomes research Patient involvement Medicine R Medicine (General) R5-920
Acceso en línea:	https://doaj.org/article/262f5803f8154e52bf9ae99b4c9d3b53
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spelling	oai:doaj.org-article:262f5803f8154e52bf9ae99b4c9d3b532021-12-05T12:10:45ZDevelopment and evaluation of a virtual patient-centered outcomes research training program for the cystic fibrosis community10.1186/s40900-021-00328-42056-7529https://doaj.org/article/262f5803f8154e52bf9ae99b4c9d3b532021-12-01T00:00:00Zhttps://doi.org/10.1186/s40900-021-00328-4https://doaj.org/toc/2056-7529Plain English Summary Cystic fibrosis (CF) is a rare, genetic disease; meaning people are born with the disease and have it throughout their lives. CF is a multi-system disease, primarily affecting the respiratory system. Daily care for people with CF (PwCF) includes taking many medications and breathing treatments. Many PwCF have experienced participating in research as research subjects, but not as partners on research teams participating as experts with the lived experience. Including patient and caregiver partners on research teams is important to improve quality of research. By working alongside each other, patient and/or caregiver partners and researchers build trust. Together, they pursue research questions deemed most important to patients and through this inclusive process, study findings are more rapidly adapted by patients and their communities. We found in a prior survey that 85% of patients, caregivers, healthcare providers and researchers in the CF community wanted training on how to include patient partners onto research teams. Our researcher and patient-partner team co-developed a four-part virtual pilot online training program focused on how to integrate patients/caregivers into research teams. This study aims to show changes in participants’ perceived knowledge, confidence in engaging stakeholders and satisfaction after participating in our training program. Participants included patients, caregivers, researchers and health care providers. We found that our training program improved knowledge about patient-engaged principles for all participants. This training program stands ready to serve as a model for further development to help increase capacity around patient and stakeholder engagement on research teams in the CF community.Emily M. GodfreyErin K. ThayerLaura MentchTraci M. KazmerskiGeorgia BrownMolly PamMorhaf Al AchkarBMCarticleCystic fibrosisCo-developmentEducationEvaluationPatient-centered outcomes researchPatient involvementMedicineRMedicine (General)R5-920ENResearch Involvement and Engagement, Vol 7, Iss 1, Pp 1-15 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Cystic fibrosis Co-development Education Evaluation Patient-centered outcomes research Patient involvement Medicine R Medicine (General) R5-920
spellingShingle	Cystic fibrosis Co-development Education Evaluation Patient-centered outcomes research Patient involvement Medicine R Medicine (General) R5-920 Emily M. Godfrey Erin K. Thayer Laura Mentch Traci M. Kazmerski Georgia Brown Molly Pam Morhaf Al Achkar Development and evaluation of a virtual patient-centered outcomes research training program for the cystic fibrosis community
description	Plain English Summary Cystic fibrosis (CF) is a rare, genetic disease; meaning people are born with the disease and have it throughout their lives. CF is a multi-system disease, primarily affecting the respiratory system. Daily care for people with CF (PwCF) includes taking many medications and breathing treatments. Many PwCF have experienced participating in research as research subjects, but not as partners on research teams participating as experts with the lived experience. Including patient and caregiver partners on research teams is important to improve quality of research. By working alongside each other, patient and/or caregiver partners and researchers build trust. Together, they pursue research questions deemed most important to patients and through this inclusive process, study findings are more rapidly adapted by patients and their communities. We found in a prior survey that 85% of patients, caregivers, healthcare providers and researchers in the CF community wanted training on how to include patient partners onto research teams. Our researcher and patient-partner team co-developed a four-part virtual pilot online training program focused on how to integrate patients/caregivers into research teams. This study aims to show changes in participants’ perceived knowledge, confidence in engaging stakeholders and satisfaction after participating in our training program. Participants included patients, caregivers, researchers and health care providers. We found that our training program improved knowledge about patient-engaged principles for all participants. This training program stands ready to serve as a model for further development to help increase capacity around patient and stakeholder engagement on research teams in the CF community.
format	article
author	Emily M. Godfrey Erin K. Thayer Laura Mentch Traci M. Kazmerski Georgia Brown Molly Pam Morhaf Al Achkar
author_facet	Emily M. Godfrey Erin K. Thayer Laura Mentch Traci M. Kazmerski Georgia Brown Molly Pam Morhaf Al Achkar
author_sort	Emily M. Godfrey
title	Development and evaluation of a virtual patient-centered outcomes research training program for the cystic fibrosis community
title_short	Development and evaluation of a virtual patient-centered outcomes research training program for the cystic fibrosis community
title_full	Development and evaluation of a virtual patient-centered outcomes research training program for the cystic fibrosis community
title_fullStr	Development and evaluation of a virtual patient-centered outcomes research training program for the cystic fibrosis community
title_full_unstemmed	Development and evaluation of a virtual patient-centered outcomes research training program for the cystic fibrosis community
title_sort	development and evaluation of a virtual patient-centered outcomes research training program for the cystic fibrosis community
publisher	BMC
publishDate	2021
url	https://doaj.org/article/262f5803f8154e52bf9ae99b4c9d3b53
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Development and evaluation of a virtual patient-centered outcomes research training program for the cystic fibrosis community

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