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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)

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)
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, 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.

Outcomes research, Patient engagement, Patient preference, Regulatory process, Treatment guidelines
1594-0667
1-11
de Wit, Maarten
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Cooper, Cyrus
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Tugwell, Peter
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Bere, Nathalie
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Kirwan, John
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Conaghan, Philip G.
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Roberts, Charlotte
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Aujoulat, Isabelle
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Al-Daghri, Nasser
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Araujo de Carvalho, Islene
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Barker, Mary
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Bedlington, Nicola
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Brandi, Maria Luisa
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Bruyère, Olivier
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Burlet, Nansa
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Halbout, Philippe
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Hiligsmann, Mickaël
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Jiwa, Famida
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Kanis, John A.
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Laslop, Andrea
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Lawrence, Wendy
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Pinto, Daniel
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Prieto Yerro, Concepción
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Rabenda, Véronique
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Rizzoli, René
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Scholte-Voshaar, Marieke
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Vlaskovska, Mila
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Reginster, Jean Yves
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de Wit, Maarten
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Cooper, Cyrus
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Tugwell, Peter
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Bere, Nathalie
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Kirwan, John
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Conaghan, Philip G.
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Roberts, Charlotte
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Aujoulat, Isabelle
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Al-Daghri, Nasser
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Araujo de Carvalho, Islene
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Barker, Mary
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Bedlington, Nicola
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Brandi, Maria Luisa
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Bruyère, Olivier
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Burlet, Nansa
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Halbout, Philippe
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Hiligsmann, Mickaël
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Jiwa, Famida
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Kanis, John A.
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Laslop, Andrea
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Lawrence, Wendy
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Pinto, Daniel
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Prieto Yerro, Concepción
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Rabenda, Véronique
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Rizzoli, René
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Scholte-Voshaar, Marieke
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Vlaskovska, Mila
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Reginster, Jean Yves
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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 and Reginster, Jean Yves (2019) 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). Aging Clinical and Experimental Research, 1-11. (doi:10.1007/s40520-019-01193-8).

Record type: Review

Abstract

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.

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Accepted/In Press date: 3 April 2019
e-pub ahead of print date: 16 April 2019
Keywords: Outcomes research, Patient engagement, Patient preference, Regulatory process, Treatment guidelines

Identifiers

Local EPrints ID: 430792
URI: http://eprints.soton.ac.uk/id/eprint/430792
ISSN: 1594-0667
PURE UUID: 813a5198-6842-4bed-9907-c37a02b7c59b
ORCID for Cyrus Cooper: ORCID iD orcid.org/0000-0003-3510-0709
ORCID for Mary Barker: ORCID iD orcid.org/0000-0003-2976-0217
ORCID for Wendy Lawrence: ORCID iD orcid.org/0000-0003-1264-0438

Catalogue record

Date deposited: 13 May 2019 16:30
Last modified: 18 Mar 2024 02:54

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Contributors

Author: Maarten de Wit
Author: Cyrus Cooper ORCID iD
Author: Peter Tugwell
Author: Nathalie Bere
Author: John Kirwan
Author: Philip G. Conaghan
Author: Charlotte Roberts
Author: Isabelle Aujoulat
Author: Nasser Al-Daghri
Author: Islene Araujo de Carvalho
Author: Mary Barker ORCID iD
Author: Nicola Bedlington
Author: Maria Luisa Brandi
Author: Olivier Bruyère
Author: Nansa Burlet
Author: Philippe Halbout
Author: Mickaël Hiligsmann
Author: Famida Jiwa
Author: John A. Kanis
Author: Andrea Laslop
Author: Wendy Lawrence ORCID iD
Author: Daniel Pinto
Author: Concepción Prieto Yerro
Author: Véronique Rabenda
Author: René Rizzoli
Author: Marieke Scholte-Voshaar
Author: Mila Vlaskovska
Author: Jean Yves Reginster

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