Article (Scientific journals)
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, M.; Cooper, Cyrus; Tugwell, P. et al.
2019In Aging Clinical and Experimental Research, 31 (7), p. 905-915
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Keywords :
Outcomes research; Patient engagement; Patient preference; Regulatory process; Treatment guidelines
Abstract :
[en] 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. © 2019, The Author(s).
Disciplines :
General & internal medicine
Author, co-author :
de Wit, M.;  Department of Medical Humanities, Amsterdam University Medical Centre, Amsterdam, Netherlands
Cooper, Cyrus 
Tugwell, P.;  Department of Medicine, University of Ottawa, Ottawa, Canada
Bere, N.;  Public Engagement Department, European Medicines Agency, 30 Churchill Place, Canary Wharf, London, E14 5EU, United Kingdom
Kirwan, J.;  Emeritus Professor of Rheumatic Diseases, University of Bristol, Bristol, United Kingdom
Conaghan, P. G.;  Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds, Leeds, United Kingdom, NIHR Leeds Biomedical Research Centre, Leeds, United Kingdom
Roberts, C.;  International Consortium for Health Outcomes Measurement, Hamilton House, 4 Mabledon Place, Bloomsbury, London, WC1H 9BB, United Kingdom
Aujoulat, I.;  Université Catholique de Louvain, Institute of Health & Society, Brussels, Belgium
Al-Daghri, N.;  Chair for Biomarkers of Chronic Diseases, Biochemistry Department, College of Science, King Saud University, Riyadh, Saudi Arabia
Araujo de Carvalho, I.;  Department of Ageing and Life Course, World Health Organization, 20 Avenue Appia, Geneva 27, 1211, Switzerland
Barker, M.;  MRC Lifecourse Epidemiology Unit, University of Southampton, Southampton General Hospital, Southampton, United Kingdom
Bedlington, N.;  European Patients’ Forum, Chaussée d’Etterbeek 180, Etterbeek, Brussels, 1040, Belgium
Brandi, M. L.;  Department of Surgery and Translational Medicine, University of Florence, Florence, Italy, Fondazione F.I.R.M.O., Florence, Italy
Bruyère, Olivier  ;  Université de Liège - ULiège > Département des sciences de la santé publique > Santé publique, Epidémiologie et Economie de la santé
Halbout, P.;  International Osteoporosis Foundation, 9 Rue Juste-Olivier, Nyon, 1260, Switzerland
Hiligsmann, M.;  Department of Health Services Research, CAPHRI Care and Public Health Research Institute, Maastricht University, Maastricht, Netherlands
Jiwa, F.;  Osteoporosis Canada, Toronto, ON, Canada
Kanis, J. A.;  Mary McKillop Health Institute, Australian Catholic University, Melbourne, Australia, Centre for Metabolic Bone Diseases, University of Sheffield Medical School, Sheffield, United Kingdom
Laslop, A.;  Scientific Office, Federal Office for Safety in Health Care, Austrian Agency for Health and Food Safety, Vienna, Austria
Lawrence, W.;  MRC Lifecourse Epidemiology Unit, University of Southampton, Southampton General Hospital, Southampton, United Kingdom, NIHR Southampton Biomedical Research Centre, University Hospital Southampton NHS Foundation Trust, Southampton, United Kingdom
Pinto, D.;  Department of Physical Therapy, College of Health Sciences, Marquette University, Milwaukee, United States, Center for Healthcare Studies, Feinberg School of Medicine, Northwestern University, Chicago, IL, United States
Prieto Yerro, C.;  Spanish Agency for Drugs and Medical Devices, Calle Campezo 1, Building 8, Madrid, 28022, Spain
Rabenda, V.;  Department of Public Health, Epidemiology and Health Economics, University of Liège, CHU Sart Tilman B23, Liège, 4000, Belgium
Scholte-Voshaar, M.;  Department of Psychology, Health and Technology, University of Twente, Enschede, Netherlands
Vlaskovska, M.;  Medical Faculty, Department of Pharmacology, Medical University Sofia, 2, Zdrave Str, Sofia, 1431, Bulgaria
Reginster, Jean-Yves  ;  Université de Liège - ULiège > Département des sciences de la santé publique > Santé publique, Epidémiologie et Economie de la santé
More authors (18 more) Less
Language :
English
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)
Publication date :
2019
Journal title :
Aging Clinical and Experimental Research
ISSN :
1594-0667
eISSN :
1720-8319
Publisher :
Springer International Publishing
Volume :
31
Issue :
7
Pages :
905-915
Peer reviewed :
Peer Reviewed verified by ORBi
Available on ORBi :
since 16 May 2019

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