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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| Format: | Article |
| Language: | English |
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BMC
2021-12-01
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| Series: | Research Involvement and Engagement |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s40900-021-00328-4 |
| _version_ | 1819202881033601024 |
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| 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 |
| collection | DOAJ |
| 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. |
| first_indexed | 2024-12-23T04:11:03Z |
| format | Article |
| id | doaj.art-262f5803f8154e52bf9ae99b4c9d3b53 |
| institution | Directory Open Access Journal |
| issn | 2056-7529 |
| language | English |
| last_indexed | 2024-12-23T04:11:03Z |
| publishDate | 2021-12-01 |
| publisher | BMC |
| record_format | Article |
| series | Research Involvement and Engagement |
| spelling | doaj.art-262f5803f8154e52bf9ae99b4c9d3b532022-12-21T18:00:30ZengBMCResearch Involvement and Engagement2056-75292021-12-017111510.1186/s40900-021-00328-4Development and evaluation of a virtual patient-centered outcomes research training program for the cystic fibrosis communityEmily M. Godfrey0Erin K. Thayer1Laura Mentch2Traci M. Kazmerski3Georgia Brown4Molly Pam5Morhaf Al Achkar6Department of Family Medicine, School of Medicine, University of WashingtonDepartment of Family Medicine, School of Medicine, University of WashingtonCystic Fibrosis Reproductive and Sexual Health CollaborativeDepartment of Pediatrics, School of Medicine, University of PittsburghCystic Fibrosis Reproductive and Sexual Health CollaborativeCystic Fibrosis Reproductive and Sexual Health CollaborativeDepartment of Family Medicine, School of Medicine, University of WashingtonPlain 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.https://doi.org/10.1186/s40900-021-00328-4Cystic fibrosisCo-developmentEducationEvaluationPatient-centered outcomes researchPatient involvement |
| spellingShingle | 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 Research Involvement and Engagement Cystic fibrosis Co-development Education Evaluation Patient-centered outcomes research Patient involvement |
| title | 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_short | 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 |
| topic | Cystic fibrosis Co-development Education Evaluation Patient-centered outcomes research Patient involvement |
| url | https://doi.org/10.1186/s40900-021-00328-4 |
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