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A paradigm for fostering patient-centered research in liver disease: The liver transplant patient-engagement program

Many federal funding and regulatory agencies require patient engagement to conduct patient-centered research and drug development. We developed a liver transplantation patient-engagement program, which can serve as a model for bringing the patient perspective to digestive diseases research. METHODS:...

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Autores principales: Lieber, Sarah R., VanWagner, Lisa B., Noriega Ramirez, Alvaro, Serper, Marina, Singal, Amit G., Evon, Donna M.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Lippincott Williams & Wilkins 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10027036/
https://www.ncbi.nlm.nih.gov/pubmed/36930873
http://dx.doi.org/10.1097/HC9.0000000000000053
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author Lieber, Sarah R.
VanWagner, Lisa B.
Noriega Ramirez, Alvaro
Serper, Marina
Singal, Amit G.
Evon, Donna M.
author_facet Lieber, Sarah R.
VanWagner, Lisa B.
Noriega Ramirez, Alvaro
Serper, Marina
Singal, Amit G.
Evon, Donna M.
author_sort Lieber, Sarah R.
collection PubMed
description Many federal funding and regulatory agencies require patient engagement to conduct patient-centered research and drug development. We developed a liver transplantation patient-engagement program, which can serve as a model for bringing the patient perspective to digestive diseases research. METHODS: Six liver transplantation patient-engagement program advisors completed training in patient engagement; participated in several virtual sessions; and completed postsession surveys. RESULTS: Qualitative and quantitative results elucidated patient-centered liver transplantation study outcomes and barriers/facilitators to conducting clinical research. Group satisfaction was very high. CONCLUSIONS: The liver transplantation patient-engagement program model provides a paradigm for how to engage patients in the formative steps of patient-centered clinical research.
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spelling pubmed-100270362023-03-21 A paradigm for fostering patient-centered research in liver disease: The liver transplant patient-engagement program Lieber, Sarah R. VanWagner, Lisa B. Noriega Ramirez, Alvaro Serper, Marina Singal, Amit G. Evon, Donna M. Hepatol Commun Research Letter Many federal funding and regulatory agencies require patient engagement to conduct patient-centered research and drug development. We developed a liver transplantation patient-engagement program, which can serve as a model for bringing the patient perspective to digestive diseases research. METHODS: Six liver transplantation patient-engagement program advisors completed training in patient engagement; participated in several virtual sessions; and completed postsession surveys. RESULTS: Qualitative and quantitative results elucidated patient-centered liver transplantation study outcomes and barriers/facilitators to conducting clinical research. Group satisfaction was very high. CONCLUSIONS: The liver transplantation patient-engagement program model provides a paradigm for how to engage patients in the formative steps of patient-centered clinical research. Lippincott Williams & Wilkins 2023-03-17 /pmc/articles/PMC10027036/ /pubmed/36930873 http://dx.doi.org/10.1097/HC9.0000000000000053 Text en Copyright © 2023 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the American Association for the Study of Liver Diseases. https://creativecommons.org/licenses/by/4.0/This is an open access article distributed under the Creative Commons Attribution License 4.0 (https://creativecommons.org/licenses/by/4.0/) (CCBY), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/)
spellingShingle Research Letter
Lieber, Sarah R.
VanWagner, Lisa B.
Noriega Ramirez, Alvaro
Serper, Marina
Singal, Amit G.
Evon, Donna M.
A paradigm for fostering patient-centered research in liver disease: The liver transplant patient-engagement program
title A paradigm for fostering patient-centered research in liver disease: The liver transplant patient-engagement program
title_full A paradigm for fostering patient-centered research in liver disease: The liver transplant patient-engagement program
title_fullStr A paradigm for fostering patient-centered research in liver disease: The liver transplant patient-engagement program
title_full_unstemmed A paradigm for fostering patient-centered research in liver disease: The liver transplant patient-engagement program
title_short A paradigm for fostering patient-centered research in liver disease: The liver transplant patient-engagement program
title_sort paradigm for fostering patient-centered research in liver disease: the liver transplant patient-engagement program
topic Research Letter
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10027036/
https://www.ncbi.nlm.nih.gov/pubmed/36930873
http://dx.doi.org/10.1097/HC9.0000000000000053
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