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)
Journal article
Maarten de Wit, Cyrus Cooper, Peter Tugwell, Nathalie Bere, John Kirwan, Philip G. Conaghan, Charlotte Roberts, Isabelle Aujoulat, Nasser Al-Daghri, Islene Araujo de Carvalho, Mary Barker, Nicola Bedlington, Maria Luisa Brandi, Olivier Bruyère, Nansa Burlet, Philippe Halbout, Mickaël Hiligsmann, Famida Jiwa, John A. Kanis, ... Jean-Yves Reginster. (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. 31(7), pp. 905-915. https://doi.org/10.1007/s40520-019-01193-8
Authors | Maarten de Wit, Cyrus Cooper, Peter Tugwell, Nathalie Bere, John Kirwan, Philip G. Conaghan, Charlotte Roberts, Isabelle Aujoulat, Nasser Al-Daghri, Islene Araujo de Carvalho, Mary Barker, Nicola Bedlington, Maria Luisa Brandi, Olivier Bruyère, Nansa Burlet, Philippe Halbout, Mickaël Hiligsmann, Famida Jiwa, John A. Kanis, Andrea Laslop, Wendy Lawrence, Daniel Pinto, Concepción Prieto Yerro, Véronique Rabenda, René Rizzoli, Marieke Scholte-Voshaar, Mila Vlaskovska and Jean-Yves Reginster |
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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. |
Keywords | outcomes research; patient engagement; patient preference; regulatory process; treatment guidelines |
Year | 2019 |
Journal | Aging Clinical and Experimental Research |
Journal citation | 31 (7), pp. 905-915 |
Publisher | Springer-Verlag Italia Srl |
ISSN | 1594-0667 |
Digital Object Identifier (DOI) | https://doi.org/10.1007/s40520-019-01193-8 |
Scopus EID | 2-s2.0-85064564369 |
Open access | Published as ‘gold’ (paid) open access |
Publisher's version | License File Access Level Open |
Publication process dates | |
Deposited | 19 Apr 2021 |
https://acuresearchbank.acu.edu.au/item/8vx60/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
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OA_de_Wit_2019_Practical_guidance_for_engaging_patients_in.pdf | |
License: CC BY 4.0 | |
File access level: Open |
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