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)

被引：54

作者：

de Wit, Maarten ^{[1
]}

Cooper, Cyrus ^{[2
,3
,4
]}

Tugwell, Peter ^{[5
]}

Bere, Nathalie ^{[6
]}

Kirwan, John ^{[7
]}

Conaghan, Philip G. ^{[8
,9
]}

Roberts, Charlotte ^{[10
]}

Aujoulat, Isabelle ^{[11
]}

Al-Daghri, Nasser ^{[12
]}

de Carvalho, Islene Araujo ^{[13
]}

Barker, Mary ^{[2
]}

Bedlington, Nicola ^{[14
]}

Brandi, Maria Luisa ^{[15
,16
]}

Bruyere, Olivier ^{[4
,17
]}

Burlet, Nansa ^{[4
]}

Halbout, Philippe ^{[18
]}

Hiligsmann, Mickael ^{[19
]}

Jiwa, Famida ^{[20
]}

Kanis, John A. ^{[21
,22
]}

Laslop, Andrea ^{[23
]}

Lawrence, Wendy ^{[2
,24
]}

Pinto, Daniel ^{[25
,26
]}

Prieto Yerro, Concepcin ^{[27
]}

Rabenda, Veronique ^{[17
]}

Rizzoli, Ren ^{[4
,28
,29
]}

Scholte-Voshaar, Marieke ^{[30
]}

Vlaskovska, Mila ^{[31
]}

Reginster, Jean-Yves ^{[4
,12
,17
]}

机构：

[1] Univ Amsterdam, Dept Med Humanities, Med Ctr, Amsterdam, Netherlands

[2] Univ Southampton, Southampton Gen Hosp, MRC Lifecourse Epidemiol Unit, Southampton, Hants, England

[3] Univ Oxford, NIHR Musculoskeletal Biomed Res Unit, Oxford, England

[4] WHO Collaborating Ctr Publ Hlth Aspects Musculosk, Liege, Belgium

[5] Univ Ottawa, Dept Med, Ottawa, ON, Canada

[6] European Med Agcy, Publ Engagement Dept, 30 Churchill Pl, London E14 5EU, England

[7] Univ Bristol, Rheumat Dis, Bristol, Avon, England

[8] Univ Leeds, Leeds Inst Rheumat & Musculoskeletal Med, Leeds, W Yorkshire, England

[9] NIHR Leeds Biomed Res Ctr, Leeds, W Yorkshire, England

[10] Int Consortium Hlth Outcomes Measurement, Hamilton House,4 Mabledon Pl, London WC1H 9BB, England

[11] Catholic Univ Louvain, Inst Hlth & Soc, Brussels, Belgium

[12] King Saud Univ, Biochem Dept, Coll Sci, Chair Biomarkers Chron Dis, Riyadh, Saudi Arabia

[13] WHO, Dept Ageing & Life Course, 20 Ave Appia, CH-1211 Geneva 27, Switzerland

[14] European Patients Forum, Chaussee dEtterbeek 180, B-1040 Brussels, Belgium

[15] Univ Florence, Dept Surg & Translat Med, Florence, Italy

[16] Fdn FIRMO, Florence, Italy

[17] Univ Liege, CHU Sart Tilman B23, Dept Publ Hlth Epidemiol & Hlth Econ, B-4000 Liege, Belgium

[18] Int Osteoporosis Fdn, 9 Rue Juste Olivier, CH-1260 Nyon, Switzerland

[19] Maastricht Univ, CAPHRI Care & Publ Hlth Res Inst, Dept Hlth Serv Res, Maastricht, Netherlands

[20] Osteoporosis Canada, Toronto, ON, Canada

[21] Australian Catholic Univ, Mary McKillop Hlth Inst, Melbourne, Vic, Australia

[22] Univ Sheffield, Ctr Metab Bone Dis, Med Sch, Sheffield, S Yorkshire, England

[23] Austrian Agcy Hlth & Food Safety, Sci Off, Fed Off Safety Hlth Care, Vienna, Austria

[24] Univ Hosp Southampton NHS Fdn Trust, NIHR Southampton Biomed Res Ctr, Southampton, Hants, England

[25] Marquette Univ, Coll Hlth Sci, Dept Phys Therapy, Milwaukee, WI 53233 USA

[26] Northwestern Univ, Feinberg Sch Med, Ctr Healthcare Studies, Chicago, IL 60611 USA

[27] Spanish Agcy Drugs & Med Devices, Calle Campezo 1,Bldg 8, Madrid 28022, Spain

[28] Geneva Univ Hosp, Div Bone Dis, Geneva, Switzerland

[29] Fac Med, Geneva, Switzerland

[30] Univ Twente, Dept Psychol Hlth & Technol, Enschede, Netherlands

[31] Med Univ Sofia, Dept Pharmacol, Med Fac, 2 Zdrave Str, Sofia 1431, Bulgaria

来源：

AGING CLINICAL AND EXPERIMENTAL RESEARCH | 2019年 / 31卷 / 07期

关键词：

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

D O I：

10.1007/s40520-019-01193-8

中图分类号：

R592 [老年病学]; C [社会科学总论];

学科分类号：

03 ; 0303 ; 100203 ;

摘要：

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.

引用

页码：905 / 915

页数：11

共 54 条

[1] Patients as Partners in Responsive Research: Methodological Notions for Collaborations in Mixed Research Teams [J].

Abma, Tineke A. ;

Nierse, Christi J. ;

Widdershoven, Guy A. M. .

QUALITATIVE HEALTH RESEARCH, 2009, 19 (03) :401-415

[2]

[Anonymous], OUTC REP PIL INV PAT

[3]

[Anonymous], OUTC REP PIL PHAS PA

[4]

[Anonymous], PHARM RES OUTC THER

[5]

[Anonymous], USERS GUIDES MED LIT

[6]

[Anonymous], EUR PAT FOR PAT EMP

[7]

[Anonymous], 2016, J MED DEV SCI, DOI DOI 10.18063/JMDS.V1I1.122

[8]

[Anonymous], PATIENT INVOLVEMENT

[9]

[Anonymous], 2009, GUID IND PAT REP OUT

[10]

[Anonymous], PAT PREF BEN RISK AS

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