Cargando…

Practical guidance for engaging patients in health research, treatment guidelines and regulatory processes: results of an expert group meeting organized by the World Health Organization (WHO) and the European Society for Clinical and Economic Aspects of Osteoporosis, Osteoarthritis and Musculoskeletal Diseases (ESCEO)

There is increasing emphasis on patient-centred research to support the development, approval and reimbursement of health interventions that best meet patients’ needs. However, there is currently little guidance on how meaningful patient engagement may be achieved. An expert working group, represent...

Descripción completa

Detalles Bibliográficos
Autores principales: de Wit, Maarten, Cooper, Cyrus, Tugwell, Peter, Bere, Nathalie, Kirwan, John, Conaghan, Philip G., Roberts, Charlotte, Aujoulat, Isabelle, Al-Daghri, Nasser, Araujo de Carvalho, Islene, Barker, Mary, Bedlington, Nicola, Brandi, Maria Luisa, Bruyère, Olivier, Burlet, Nansa, Halbout, Philippe, Hiligsmann, Mickaël, Jiwa, Famida, Kanis, John A., Laslop, Andrea, Lawrence, Wendy, Pinto, Daniel, Prieto Yerro, Concepción, Rabenda, Véronique, Rizzoli, René, Scholte-Voshaar, Marieke, Vlaskovska, Mila, Reginster, Jean-Yves
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer International Publishing 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6589151/
https://www.ncbi.nlm.nih.gov/pubmed/30993659
http://dx.doi.org/10.1007/s40520-019-01193-8
_version_ 1783429343689572352
author de Wit, Maarten
Cooper, Cyrus
Tugwell, Peter
Bere, Nathalie
Kirwan, John
Conaghan, Philip G.
Roberts, Charlotte
Aujoulat, Isabelle
Al-Daghri, Nasser
Araujo de Carvalho, Islene
Barker, Mary
Bedlington, Nicola
Brandi, Maria Luisa
Bruyère, Olivier
Burlet, Nansa
Halbout, Philippe
Hiligsmann, Mickaël
Jiwa, Famida
Kanis, John A.
Laslop, Andrea
Lawrence, Wendy
Pinto, Daniel
Prieto Yerro, Concepción
Rabenda, Véronique
Rizzoli, René
Scholte-Voshaar, Marieke
Vlaskovska, Mila
Reginster, Jean-Yves
author_facet de Wit, Maarten
Cooper, Cyrus
Tugwell, Peter
Bere, Nathalie
Kirwan, John
Conaghan, Philip G.
Roberts, Charlotte
Aujoulat, Isabelle
Al-Daghri, Nasser
Araujo de Carvalho, Islene
Barker, Mary
Bedlington, Nicola
Brandi, Maria Luisa
Bruyère, Olivier
Burlet, Nansa
Halbout, Philippe
Hiligsmann, Mickaël
Jiwa, Famida
Kanis, John A.
Laslop, Andrea
Lawrence, Wendy
Pinto, Daniel
Prieto Yerro, Concepción
Rabenda, Véronique
Rizzoli, René
Scholte-Voshaar, Marieke
Vlaskovska, Mila
Reginster, Jean-Yves
author_sort de Wit, Maarten
collection PubMed
description There is increasing emphasis on patient-centred research to support the development, approval and reimbursement of health interventions that best meet patients’ needs. However, there is currently little guidance on how meaningful patient engagement may be achieved. An expert working group, representing a wide range of stakeholders and disciplines, was convened by the European Society for Clinical and Economic Aspects of Osteoporosis, Osteoarthritis and Musculoskeletal Diseases (ESCEO) and the World Health Organization (WHO). Through a structured, collaborative process the group generated practical guidance to facilitate optimal patient engagement in clinical development and regulatory decisions. Patient engagement is a relational process. The principles outlined in this report were based on lessons learned through applied experience and on an extensive dialogue among the expert participants. This practice guidance forms a starting point from which tailoring of the approach to suit different chronic diseases may be undertaken.
format Online
Article
Text
id pubmed-6589151
institution National Center for Biotechnology Information
language English
publishDate 2019
publisher Springer International Publishing
record_format MEDLINE/PubMed
spelling pubmed-65891512019-07-05 Practical guidance for engaging patients in health research, treatment guidelines and regulatory processes: results of an expert group meeting organized by the World Health Organization (WHO) and the European Society for Clinical and Economic Aspects of Osteoporosis, Osteoarthritis and Musculoskeletal Diseases (ESCEO) de Wit, Maarten Cooper, Cyrus Tugwell, Peter Bere, Nathalie Kirwan, John Conaghan, Philip G. Roberts, Charlotte Aujoulat, Isabelle Al-Daghri, Nasser Araujo de Carvalho, Islene Barker, Mary Bedlington, Nicola Brandi, Maria Luisa Bruyère, Olivier Burlet, Nansa Halbout, Philippe Hiligsmann, Mickaël Jiwa, Famida Kanis, John A. Laslop, Andrea Lawrence, Wendy Pinto, Daniel Prieto Yerro, Concepción Rabenda, Véronique Rizzoli, René Scholte-Voshaar, Marieke Vlaskovska, Mila Reginster, Jean-Yves Aging Clin Exp Res Review There is increasing emphasis on patient-centred research to support the development, approval and reimbursement of health interventions that best meet patients’ needs. However, there is currently little guidance on how meaningful patient engagement may be achieved. An expert working group, representing a wide range of stakeholders and disciplines, was convened by the European Society for Clinical and Economic Aspects of Osteoporosis, Osteoarthritis and Musculoskeletal Diseases (ESCEO) and the World Health Organization (WHO). Through a structured, collaborative process the group generated practical guidance to facilitate optimal patient engagement in clinical development and regulatory decisions. Patient engagement is a relational process. The principles outlined in this report were based on lessons learned through applied experience and on an extensive dialogue among the expert participants. This practice guidance forms a starting point from which tailoring of the approach to suit different chronic diseases may be undertaken. Springer International Publishing 2019-04-16 2019 /pmc/articles/PMC6589151/ /pubmed/30993659 http://dx.doi.org/10.1007/s40520-019-01193-8 Text en © The Author(s) 2019 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.
spellingShingle Review
de Wit, Maarten
Cooper, Cyrus
Tugwell, Peter
Bere, Nathalie
Kirwan, John
Conaghan, Philip G.
Roberts, Charlotte
Aujoulat, Isabelle
Al-Daghri, Nasser
Araujo de Carvalho, Islene
Barker, Mary
Bedlington, Nicola
Brandi, Maria Luisa
Bruyère, Olivier
Burlet, Nansa
Halbout, Philippe
Hiligsmann, Mickaël
Jiwa, Famida
Kanis, John A.
Laslop, Andrea
Lawrence, Wendy
Pinto, Daniel
Prieto Yerro, Concepción
Rabenda, Véronique
Rizzoli, René
Scholte-Voshaar, Marieke
Vlaskovska, Mila
Reginster, Jean-Yves
Practical guidance for engaging patients in health research, treatment guidelines and regulatory processes: results of an expert group meeting organized by the World Health Organization (WHO) and the European Society for Clinical and Economic Aspects of Osteoporosis, Osteoarthritis and Musculoskeletal Diseases (ESCEO)
title Practical guidance for engaging patients in health research, treatment guidelines and regulatory processes: results of an expert group meeting organized by the World Health Organization (WHO) and the European Society for Clinical and Economic Aspects of Osteoporosis, Osteoarthritis and Musculoskeletal Diseases (ESCEO)
title_full Practical guidance for engaging patients in health research, treatment guidelines and regulatory processes: results of an expert group meeting organized by the World Health Organization (WHO) and the European Society for Clinical and Economic Aspects of Osteoporosis, Osteoarthritis and Musculoskeletal Diseases (ESCEO)
title_fullStr Practical guidance for engaging patients in health research, treatment guidelines and regulatory processes: results of an expert group meeting organized by the World Health Organization (WHO) and the European Society for Clinical and Economic Aspects of Osteoporosis, Osteoarthritis and Musculoskeletal Diseases (ESCEO)
title_full_unstemmed Practical guidance for engaging patients in health research, treatment guidelines and regulatory processes: results of an expert group meeting organized by the World Health Organization (WHO) and the European Society for Clinical and Economic Aspects of Osteoporosis, Osteoarthritis and Musculoskeletal Diseases (ESCEO)
title_short Practical guidance for engaging patients in health research, treatment guidelines and regulatory processes: results of an expert group meeting organized by the World Health Organization (WHO) and the European Society for Clinical and Economic Aspects of Osteoporosis, Osteoarthritis and Musculoskeletal Diseases (ESCEO)
title_sort practical guidance for engaging patients in health research, treatment guidelines and regulatory processes: results of an expert group meeting organized by the world health organization (who) and the european society for clinical and economic aspects of osteoporosis, osteoarthritis and musculoskeletal diseases (esceo)
topic Review
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6589151/
https://www.ncbi.nlm.nih.gov/pubmed/30993659
http://dx.doi.org/10.1007/s40520-019-01193-8
work_keys_str_mv AT dewitmaarten practicalguidanceforengagingpatientsinhealthresearchtreatmentguidelinesandregulatoryprocessesresultsofanexpertgroupmeetingorganizedbytheworldhealthorganizationwhoandtheeuropeansocietyforclinicalandeconomicaspectsofosteoporosisosteoarthritisandmusculoskele
AT coopercyrus practicalguidanceforengagingpatientsinhealthresearchtreatmentguidelinesandregulatoryprocessesresultsofanexpertgroupmeetingorganizedbytheworldhealthorganizationwhoandtheeuropeansocietyforclinicalandeconomicaspectsofosteoporosisosteoarthritisandmusculoskele
AT tugwellpeter practicalguidanceforengagingpatientsinhealthresearchtreatmentguidelinesandregulatoryprocessesresultsofanexpertgroupmeetingorganizedbytheworldhealthorganizationwhoandtheeuropeansocietyforclinicalandeconomicaspectsofosteoporosisosteoarthritisandmusculoskele
AT berenathalie practicalguidanceforengagingpatientsinhealthresearchtreatmentguidelinesandregulatoryprocessesresultsofanexpertgroupmeetingorganizedbytheworldhealthorganizationwhoandtheeuropeansocietyforclinicalandeconomicaspectsofosteoporosisosteoarthritisandmusculoskele
AT kirwanjohn practicalguidanceforengagingpatientsinhealthresearchtreatmentguidelinesandregulatoryprocessesresultsofanexpertgroupmeetingorganizedbytheworldhealthorganizationwhoandtheeuropeansocietyforclinicalandeconomicaspectsofosteoporosisosteoarthritisandmusculoskele
AT conaghanphilipg practicalguidanceforengagingpatientsinhealthresearchtreatmentguidelinesandregulatoryprocessesresultsofanexpertgroupmeetingorganizedbytheworldhealthorganizationwhoandtheeuropeansocietyforclinicalandeconomicaspectsofosteoporosisosteoarthritisandmusculoskele
AT robertscharlotte practicalguidanceforengagingpatientsinhealthresearchtreatmentguidelinesandregulatoryprocessesresultsofanexpertgroupmeetingorganizedbytheworldhealthorganizationwhoandtheeuropeansocietyforclinicalandeconomicaspectsofosteoporosisosteoarthritisandmusculoskele
AT aujoulatisabelle practicalguidanceforengagingpatientsinhealthresearchtreatmentguidelinesandregulatoryprocessesresultsofanexpertgroupmeetingorganizedbytheworldhealthorganizationwhoandtheeuropeansocietyforclinicalandeconomicaspectsofosteoporosisosteoarthritisandmusculoskele
AT aldaghrinasser practicalguidanceforengagingpatientsinhealthresearchtreatmentguidelinesandregulatoryprocessesresultsofanexpertgroupmeetingorganizedbytheworldhealthorganizationwhoandtheeuropeansocietyforclinicalandeconomicaspectsofosteoporosisosteoarthritisandmusculoskele
AT araujodecarvalhoislene practicalguidanceforengagingpatientsinhealthresearchtreatmentguidelinesandregulatoryprocessesresultsofanexpertgroupmeetingorganizedbytheworldhealthorganizationwhoandtheeuropeansocietyforclinicalandeconomicaspectsofosteoporosisosteoarthritisandmusculoskele
AT barkermary practicalguidanceforengagingpatientsinhealthresearchtreatmentguidelinesandregulatoryprocessesresultsofanexpertgroupmeetingorganizedbytheworldhealthorganizationwhoandtheeuropeansocietyforclinicalandeconomicaspectsofosteoporosisosteoarthritisandmusculoskele
AT bedlingtonnicola practicalguidanceforengagingpatientsinhealthresearchtreatmentguidelinesandregulatoryprocessesresultsofanexpertgroupmeetingorganizedbytheworldhealthorganizationwhoandtheeuropeansocietyforclinicalandeconomicaspectsofosteoporosisosteoarthritisandmusculoskele
AT brandimarialuisa practicalguidanceforengagingpatientsinhealthresearchtreatmentguidelinesandregulatoryprocessesresultsofanexpertgroupmeetingorganizedbytheworldhealthorganizationwhoandtheeuropeansocietyforclinicalandeconomicaspectsofosteoporosisosteoarthritisandmusculoskele
AT bruyereolivier practicalguidanceforengagingpatientsinhealthresearchtreatmentguidelinesandregulatoryprocessesresultsofanexpertgroupmeetingorganizedbytheworldhealthorganizationwhoandtheeuropeansocietyforclinicalandeconomicaspectsofosteoporosisosteoarthritisandmusculoskele
AT burletnansa practicalguidanceforengagingpatientsinhealthresearchtreatmentguidelinesandregulatoryprocessesresultsofanexpertgroupmeetingorganizedbytheworldhealthorganizationwhoandtheeuropeansocietyforclinicalandeconomicaspectsofosteoporosisosteoarthritisandmusculoskele
AT halboutphilippe practicalguidanceforengagingpatientsinhealthresearchtreatmentguidelinesandregulatoryprocessesresultsofanexpertgroupmeetingorganizedbytheworldhealthorganizationwhoandtheeuropeansocietyforclinicalandeconomicaspectsofosteoporosisosteoarthritisandmusculoskele
AT hiligsmannmickael practicalguidanceforengagingpatientsinhealthresearchtreatmentguidelinesandregulatoryprocessesresultsofanexpertgroupmeetingorganizedbytheworldhealthorganizationwhoandtheeuropeansocietyforclinicalandeconomicaspectsofosteoporosisosteoarthritisandmusculoskele
AT jiwafamida practicalguidanceforengagingpatientsinhealthresearchtreatmentguidelinesandregulatoryprocessesresultsofanexpertgroupmeetingorganizedbytheworldhealthorganizationwhoandtheeuropeansocietyforclinicalandeconomicaspectsofosteoporosisosteoarthritisandmusculoskele
AT kanisjohna practicalguidanceforengagingpatientsinhealthresearchtreatmentguidelinesandregulatoryprocessesresultsofanexpertgroupmeetingorganizedbytheworldhealthorganizationwhoandtheeuropeansocietyforclinicalandeconomicaspectsofosteoporosisosteoarthritisandmusculoskele
AT laslopandrea practicalguidanceforengagingpatientsinhealthresearchtreatmentguidelinesandregulatoryprocessesresultsofanexpertgroupmeetingorganizedbytheworldhealthorganizationwhoandtheeuropeansocietyforclinicalandeconomicaspectsofosteoporosisosteoarthritisandmusculoskele
AT lawrencewendy practicalguidanceforengagingpatientsinhealthresearchtreatmentguidelinesandregulatoryprocessesresultsofanexpertgroupmeetingorganizedbytheworldhealthorganizationwhoandtheeuropeansocietyforclinicalandeconomicaspectsofosteoporosisosteoarthritisandmusculoskele
AT pintodaniel practicalguidanceforengagingpatientsinhealthresearchtreatmentguidelinesandregulatoryprocessesresultsofanexpertgroupmeetingorganizedbytheworldhealthorganizationwhoandtheeuropeansocietyforclinicalandeconomicaspectsofosteoporosisosteoarthritisandmusculoskele
AT prietoyerroconcepcion practicalguidanceforengagingpatientsinhealthresearchtreatmentguidelinesandregulatoryprocessesresultsofanexpertgroupmeetingorganizedbytheworldhealthorganizationwhoandtheeuropeansocietyforclinicalandeconomicaspectsofosteoporosisosteoarthritisandmusculoskele
AT rabendaveronique practicalguidanceforengagingpatientsinhealthresearchtreatmentguidelinesandregulatoryprocessesresultsofanexpertgroupmeetingorganizedbytheworldhealthorganizationwhoandtheeuropeansocietyforclinicalandeconomicaspectsofosteoporosisosteoarthritisandmusculoskele
AT rizzolirene practicalguidanceforengagingpatientsinhealthresearchtreatmentguidelinesandregulatoryprocessesresultsofanexpertgroupmeetingorganizedbytheworldhealthorganizationwhoandtheeuropeansocietyforclinicalandeconomicaspectsofosteoporosisosteoarthritisandmusculoskele
AT scholtevoshaarmarieke practicalguidanceforengagingpatientsinhealthresearchtreatmentguidelinesandregulatoryprocessesresultsofanexpertgroupmeetingorganizedbytheworldhealthorganizationwhoandtheeuropeansocietyforclinicalandeconomicaspectsofosteoporosisosteoarthritisandmusculoskele
AT vlaskovskamila practicalguidanceforengagingpatientsinhealthresearchtreatmentguidelinesandregulatoryprocessesresultsofanexpertgroupmeetingorganizedbytheworldhealthorganizationwhoandtheeuropeansocietyforclinicalandeconomicaspectsofosteoporosisosteoarthritisandmusculoskele
AT reginsterjeanyves practicalguidanceforengagingpatientsinhealthresearchtreatmentguidelinesandregulatoryprocessesresultsofanexpertgroupmeetingorganizedbytheworldhealthorganizationwhoandtheeuropeansocietyforclinicalandeconomicaspectsofosteoporosisosteoarthritisandmusculoskele