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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).
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.
Affiliation
  • de Wit M; Department of Medical Humanities, Amsterdam University Medical Centre, Amsterdam, The Netherlands.
  • Cooper C; MRC Lifecourse Epidemiology Unit, University of Southampton, Southampton General Hospital, Southampton, UK.
  • Tugwell P; NIHR Musculoskeletal Biomedical Research Unit, University of Oxford, Oxford, UK.
  • Bere N; WHO Collaborating Centre for Public Health Aspects of Musculoskeletal Health and Aging, Liège, Belgium.
  • Kirwan J; Department of Medicine, University of Ottawa, Ottawa, Canada.
  • Conaghan PG; Public Engagement Department, European Medicines Agency, 30 Churchill Place, Canary Wharf, London, E14 5EU, UK.
  • Roberts C; Emeritus Professor of Rheumatic Diseases, University of Bristol, Bristol, UK.
  • Aujoulat I; Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds, Leeds, UK.
  • Al-Daghri N; NIHR Leeds Biomedical Research Centre, Leeds, UK.
  • Araujo de Carvalho I; International Consortium for Health Outcomes Measurement, Hamilton House, 4 Mabledon Place, Bloomsbury, London, WC1H 9BB, UK.
  • Barker M; Université Catholique de Louvain, Institute of Health & Society, Brussels, Belgium.
  • Bedlington N; Chair for Biomarkers of Chronic Diseases, Biochemistry Department, College of Science, King Saud University, Riyadh, Kingdom of Saudi Arabia.
  • Brandi ML; Department of Ageing and Life Course, World Health Organization, 20 Avenue Appia, 1211, Geneva 27, Switzerland.
  • Bruyère O; MRC Lifecourse Epidemiology Unit, University of Southampton, Southampton General Hospital, Southampton, UK.
  • Burlet N; European Patients' Forum, Chaussée d'Etterbeek 180, Etterbeek, 1040, Brussels, Belgium.
  • Halbout P; Department of Surgery and Translational Medicine, University of Florence, Florence, Italy.
  • Hiligsmann M; Fondazione F.I.R.M.O., Florence, Italy.
  • Jiwa F; WHO Collaborating Centre for Public Health Aspects of Musculoskeletal Health and Aging, Liège, Belgium.
  • Kanis JA; Department of Public Health, Epidemiology and Health Economics, University of Liège, CHU Sart Tilman B23, 4000, Liège, Belgium.
  • Laslop A; WHO Collaborating Centre for Public Health Aspects of Musculoskeletal Health and Aging, Liège, Belgium.
  • Lawrence W; International Osteoporosis Foundation, 9 Rue Juste-Olivier, 1260, Nyon, Switzerland.
  • Pinto D; Department of Health Services Research, CAPHRI Care and Public Health Research Institute, Maastricht University, Maastricht, The Netherlands.
  • Prieto Yerro C; Osteoporosis Canada, Toronto, ON, Canada.
  • Rabenda V; Mary McKillop Health Institute, Australian Catholic University, Melbourne, Australia.
  • Rizzoli R; Centre for Metabolic Bone Diseases, University of Sheffield Medical School, Sheffield, UK.
  • Scholte-Voshaar M; Scientific Office, Federal Office for Safety in Health Care, Austrian Agency for Health and Food Safety, Vienna, Austria.
  • Vlaskovska M; MRC Lifecourse Epidemiology Unit, University of Southampton, Southampton General Hospital, Southampton, UK.
  • Reginster JY; NIHR Southampton Biomedical Research Centre, University Hospital Southampton NHS Foundation Trust, Southampton, UK.
Aging Clin Exp Res ; 31(7): 905-915, 2019 Jul.
Article de En | MEDLINE | ID: mdl-30993659
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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Texte intégral: 1 Collection: 01-internacional Base de données: MEDLINE Sujet principal: Arthrose / Ostéoporose / Participation des patients Type d'étude: Guideline / Health_economic_evaluation / Prognostic_studies Aspects: Determinantes_sociais_saude / Patient_preference Limites: Humans Langue: En Journal: Aging Clin Exp Res Sujet du journal: GERIATRIA Année: 2019 Type de document: Article Pays d'affiliation: Pays-Bas

Texte intégral: 1 Collection: 01-internacional Base de données: MEDLINE Sujet principal: Arthrose / Ostéoporose / Participation des patients Type d'étude: Guideline / Health_economic_evaluation / Prognostic_studies Aspects: Determinantes_sociais_saude / Patient_preference Limites: Humans Langue: En Journal: Aging Clin Exp Res Sujet du journal: GERIATRIA Année: 2019 Type de document: Article Pays d'affiliation: Pays-Bas