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Patients’ perspective on how to improve the care of people with chronic conditions in France: a citizen science study within the ComPaRe e-cohort

BACKGROUND: This study aimed to involve patients with chronic conditions in generating ideas for improving their care. METHODS: We performed a citizen science study. Participants were adult patients with chronic conditions recruited in Community of Patients for Research ‘ComPaRe,’ a French e-cohort...

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Autores principales: Tran, Viet-Thi, Riveros, Carolina, Péan, Clarisse, Czarnobroda, Arnaud, Ravaud, Philippe
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6860767/
https://www.ncbi.nlm.nih.gov/pubmed/31015376
http://dx.doi.org/10.1136/bmjqs-2018-008593
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author Tran, Viet-Thi
Riveros, Carolina
Péan, Clarisse
Czarnobroda, Arnaud
Ravaud, Philippe
author_facet Tran, Viet-Thi
Riveros, Carolina
Péan, Clarisse
Czarnobroda, Arnaud
Ravaud, Philippe
author_sort Tran, Viet-Thi
collection PubMed
description BACKGROUND: This study aimed to involve patients with chronic conditions in generating ideas for improving their care. METHODS: We performed a citizen science study. Participants were adult patients with chronic conditions recruited in Community of Patients for Research ‘ComPaRe,’ a French e-cohort of patients with chronic conditions. Participants generated ideas to improve their care in answer to the open-ended question, ‘If you had a magic wand, what would you change in your healthcare?’ Three researchers and two patients independently extracted ideas from open-ended answers by using thematic analysis. Ideas were grouped into areas for improvement at the consultation, hospital/clinic and health system levels. Findings were validated and enriched by a second sample of participants recruited in ComPaRe. RESULTS: Between May 2017 and April 2018, a total of 1636 patients provided 3613 ideas to improve consultations (1701 ideas related to 58 areas for improvement), hospitals/clinics (928 ideas related to 41 areas for improvement) and the health system (984 ideas related to 48 areas for improvement). At the consultation level, most ideas were related to improving physician–patient discussions, informing patients about their own care, and adapting treatment to patient preferences and context. At the hospital/clinic level, most ideas aimed at improving the coordination and collaboration in care. At the health system level, most ideas were related to decreasing the administrative burden imposed on patients, improving access to care and reducing the costs of care. CONCLUSION: Patients have many ideas to improve their care, from the content of consultations to the organisation of hospitals. Our study provides the proof of concept for a method to leverage patients’ practical knowledge of the care system to improve it.
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spelling pubmed-68607672019-12-03 Patients’ perspective on how to improve the care of people with chronic conditions in France: a citizen science study within the ComPaRe e-cohort Tran, Viet-Thi Riveros, Carolina Péan, Clarisse Czarnobroda, Arnaud Ravaud, Philippe BMJ Qual Saf Original Research BACKGROUND: This study aimed to involve patients with chronic conditions in generating ideas for improving their care. METHODS: We performed a citizen science study. Participants were adult patients with chronic conditions recruited in Community of Patients for Research ‘ComPaRe,’ a French e-cohort of patients with chronic conditions. Participants generated ideas to improve their care in answer to the open-ended question, ‘If you had a magic wand, what would you change in your healthcare?’ Three researchers and two patients independently extracted ideas from open-ended answers by using thematic analysis. Ideas were grouped into areas for improvement at the consultation, hospital/clinic and health system levels. Findings were validated and enriched by a second sample of participants recruited in ComPaRe. RESULTS: Between May 2017 and April 2018, a total of 1636 patients provided 3613 ideas to improve consultations (1701 ideas related to 58 areas for improvement), hospitals/clinics (928 ideas related to 41 areas for improvement) and the health system (984 ideas related to 48 areas for improvement). At the consultation level, most ideas were related to improving physician–patient discussions, informing patients about their own care, and adapting treatment to patient preferences and context. At the hospital/clinic level, most ideas aimed at improving the coordination and collaboration in care. At the health system level, most ideas were related to decreasing the administrative burden imposed on patients, improving access to care and reducing the costs of care. CONCLUSION: Patients have many ideas to improve their care, from the content of consultations to the organisation of hospitals. Our study provides the proof of concept for a method to leverage patients’ practical knowledge of the care system to improve it. BMJ Publishing Group 2019-11 2019-04-23 /pmc/articles/PMC6860767/ /pubmed/31015376 http://dx.doi.org/10.1136/bmjqs-2018-008593 Text en © Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
spellingShingle Original Research
Tran, Viet-Thi
Riveros, Carolina
Péan, Clarisse
Czarnobroda, Arnaud
Ravaud, Philippe
Patients’ perspective on how to improve the care of people with chronic conditions in France: a citizen science study within the ComPaRe e-cohort
title Patients’ perspective on how to improve the care of people with chronic conditions in France: a citizen science study within the ComPaRe e-cohort
title_full Patients’ perspective on how to improve the care of people with chronic conditions in France: a citizen science study within the ComPaRe e-cohort
title_fullStr Patients’ perspective on how to improve the care of people with chronic conditions in France: a citizen science study within the ComPaRe e-cohort
title_full_unstemmed Patients’ perspective on how to improve the care of people with chronic conditions in France: a citizen science study within the ComPaRe e-cohort
title_short Patients’ perspective on how to improve the care of people with chronic conditions in France: a citizen science study within the ComPaRe e-cohort
title_sort patients’ perspective on how to improve the care of people with chronic conditions in france: a citizen science study within the compare e-cohort
topic Original Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6860767/
https://www.ncbi.nlm.nih.gov/pubmed/31015376
http://dx.doi.org/10.1136/bmjqs-2018-008593
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