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)

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 Bruyere, Nansa Burlet, Philippe Halbout, Mickael Hiligsmann, Famida Jiwa, John A. Kanis, Andrea LaslopWendy Lawrence, Daniel Pinto, Concepcin Prieto Yerro, Veronique Rabenda, Ren Rizzoli, Marieke Scholte-Voshaar, Mila Vlaskovska, Jean-Yves Reginster*

*Corresponding author for this work

Research output: Contribution to journal(Systematic) Review article peer-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.

Original languageEnglish
Pages (from-to)905-915
Number of pages11
JournalAging Clinical and Experimental Research
Volume31
Issue number7
DOIs
Publication statusPublished - Jul 2019

Keywords

  • Outcomes research
  • Patient engagement
  • Patient preference
  • Regulatory process
  • Treatment guidelines
  • DISCRETE-CHOICE EXPERIMENT
  • PUBLIC INVOLVEMENT
  • DRUG DEVELOPMENT
  • CORE SET
  • PREFERENCES
  • ENGAGEMENT
  • PARTNERS

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