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Leveraging a qualitative data repository to integrate patient and caregiver perspectives into clinical research

Understanding patient and caregiver experiences is a critical component of the conception, design, and implementation of clinical research studies. The “Database of Individual Patient Experiences” (DIPEx) is an innovative, evidence-based approach for eliciting rich information about health experienc...

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Detalles Bibliográficos
Autores principales: Christensen, Vivian, Parker, Kellee, Cottrell, Erika
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Cambridge University Press 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8427548/
https://www.ncbi.nlm.nih.gov/pubmed/34527294
http://dx.doi.org/10.1017/cts.2021.822
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author Christensen, Vivian
Parker, Kellee
Cottrell, Erika
author_facet Christensen, Vivian
Parker, Kellee
Cottrell, Erika
author_sort Christensen, Vivian
collection PubMed
description Understanding patient and caregiver experiences is a critical component of the conception, design, and implementation of clinical research studies. The “Database of Individual Patient Experiences” (DIPEx) is an innovative, evidence-based approach for eliciting rich information about health experiences. We conducted a formative evaluation with 14 pediatric oncology researchers to assess the value of using data from a DIPEx study on patient and caregiver experiences with childhood cancer to inform patient-centered research in pediatric oncology. Participants identified barriers to incorporating patient perspectives and experiences into their research and how the DIPEx approach could be leveraged to facilitate this practice.
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spelling pubmed-84275482021-09-14 Leveraging a qualitative data repository to integrate patient and caregiver perspectives into clinical research Christensen, Vivian Parker, Kellee Cottrell, Erika J Clin Transl Sci Brief Report Understanding patient and caregiver experiences is a critical component of the conception, design, and implementation of clinical research studies. The “Database of Individual Patient Experiences” (DIPEx) is an innovative, evidence-based approach for eliciting rich information about health experiences. We conducted a formative evaluation with 14 pediatric oncology researchers to assess the value of using data from a DIPEx study on patient and caregiver experiences with childhood cancer to inform patient-centered research in pediatric oncology. Participants identified barriers to incorporating patient perspectives and experiences into their research and how the DIPEx approach could be leveraged to facilitate this practice. Cambridge University Press 2021-07-21 /pmc/articles/PMC8427548/ /pubmed/34527294 http://dx.doi.org/10.1017/cts.2021.822 Text en © The Association for Clinical and Translational Science 2021 https://creativecommons.org/licenses/by/4.0/This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Brief Report
Christensen, Vivian
Parker, Kellee
Cottrell, Erika
Leveraging a qualitative data repository to integrate patient and caregiver perspectives into clinical research
title Leveraging a qualitative data repository to integrate patient and caregiver perspectives into clinical research
title_full Leveraging a qualitative data repository to integrate patient and caregiver perspectives into clinical research
title_fullStr Leveraging a qualitative data repository to integrate patient and caregiver perspectives into clinical research
title_full_unstemmed Leveraging a qualitative data repository to integrate patient and caregiver perspectives into clinical research
title_short Leveraging a qualitative data repository to integrate patient and caregiver perspectives into clinical research
title_sort leveraging a qualitative data repository to integrate patient and caregiver perspectives into clinical research
topic Brief Report
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8427548/
https://www.ncbi.nlm.nih.gov/pubmed/34527294
http://dx.doi.org/10.1017/cts.2021.822
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