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)
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)
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.
Outcomes research, Patient engagement, Patient preference, Regulatory process, Treatment guidelines
1-11
de Wit, Maarten
6667be67-8329-419d-918e-a7876e7a5f98
Cooper, Cyrus
e05f5612-b493-4273-9b71-9e0ce32bdad6
Tugwell, Peter
a1e40837-b713-4f06-bb03-8360c16e01d3
Bere, Nathalie
b5b2aa45-8a31-49bd-b333-ee5521b05cc6
Kirwan, John
b09e2718-5897-4229-9ad7-b69d2b00ed98
Conaghan, Philip G.
fa728497-0347-4695-be2a-52a710f75c53
Roberts, Charlotte
9f41ad88-7a22-4c8f-b7d9-28ca308e911f
Aujoulat, Isabelle
66ecefe3-3ffa-431d-aaea-3f71a22e81c2
Al-Daghri, Nasser
0bf1023c-a104-4f74-8b06-87780dfbd8b4
Araujo de Carvalho, Islene
a3c5b696-9fd9-4f7f-b878-8355ec70d418
Barker, Mary
374310ad-d308-44af-b6da-515bf5d2d6d2
Bedlington, Nicola
99c3ddbb-ce12-4753-b1e2-cc7b2dfe1bdd
Brandi, Maria Luisa
b42820a8-1622-4a0d-8f9b-3f53f2e90180
Bruyère, Olivier
ba727e54-ca17-4fa8-be3d-4729fb4b8c0d
Burlet, Nansa
ac700618-10d2-4a9c-8892-3727ab64c226
Halbout, Philippe
a6bac6c8-e463-4c0d-bb75-389ad2b0b945
Hiligsmann, Mickaël
120a5b99-2a0a-4a17-99d1-c0e5147d4f59
Jiwa, Famida
a5ad7ac5-7ba9-4473-9010-0acb0d713e4c
Kanis, John A.
f1621d8d-8afb-4d97-9679-2165d88a344d
Laslop, Andrea
d6cf9614-e6a6-4409-a5c2-875d66bda941
Lawrence, Wendy
e9babc0a-02c9-41df-a289-7b18f17bf7d8
Pinto, Daniel
2f32bcdc-1214-4e34-a280-e76582a650d4
Prieto Yerro, Concepción
38be78a0-7386-48ad-a21e-d2014ee28f07
Rabenda, Véronique
cc81b2c5-82bc-490a-ae8b-94d251b7b5ed
Rizzoli, René
c1190577-8164-471d-b90f-6959f92bc25e
Scholte-Voshaar, Marieke
4ad0d309-0a76-448e-8e0b-3ed465f95f4d
Vlaskovska, Mila
502544a0-c942-466a-a73a-f0019ce89c6f
Reginster, Jean Yves
08b05e27-73dd-4ce9-90e5-d64ec922147a
de Wit, Maarten
6667be67-8329-419d-918e-a7876e7a5f98
Cooper, Cyrus
e05f5612-b493-4273-9b71-9e0ce32bdad6
Tugwell, Peter
a1e40837-b713-4f06-bb03-8360c16e01d3
Bere, Nathalie
b5b2aa45-8a31-49bd-b333-ee5521b05cc6
Kirwan, John
b09e2718-5897-4229-9ad7-b69d2b00ed98
Conaghan, Philip G.
fa728497-0347-4695-be2a-52a710f75c53
Roberts, Charlotte
9f41ad88-7a22-4c8f-b7d9-28ca308e911f
Aujoulat, Isabelle
66ecefe3-3ffa-431d-aaea-3f71a22e81c2
Al-Daghri, Nasser
0bf1023c-a104-4f74-8b06-87780dfbd8b4
Araujo de Carvalho, Islene
a3c5b696-9fd9-4f7f-b878-8355ec70d418
Barker, Mary
374310ad-d308-44af-b6da-515bf5d2d6d2
Bedlington, Nicola
99c3ddbb-ce12-4753-b1e2-cc7b2dfe1bdd
Brandi, Maria Luisa
b42820a8-1622-4a0d-8f9b-3f53f2e90180
Bruyère, Olivier
ba727e54-ca17-4fa8-be3d-4729fb4b8c0d
Burlet, Nansa
ac700618-10d2-4a9c-8892-3727ab64c226
Halbout, Philippe
a6bac6c8-e463-4c0d-bb75-389ad2b0b945
Hiligsmann, Mickaël
120a5b99-2a0a-4a17-99d1-c0e5147d4f59
Jiwa, Famida
a5ad7ac5-7ba9-4473-9010-0acb0d713e4c
Kanis, John A.
f1621d8d-8afb-4d97-9679-2165d88a344d
Laslop, Andrea
d6cf9614-e6a6-4409-a5c2-875d66bda941
Lawrence, Wendy
e9babc0a-02c9-41df-a289-7b18f17bf7d8
Pinto, Daniel
2f32bcdc-1214-4e34-a280-e76582a650d4
Prieto Yerro, Concepción
38be78a0-7386-48ad-a21e-d2014ee28f07
Rabenda, Véronique
cc81b2c5-82bc-490a-ae8b-94d251b7b5ed
Rizzoli, René
c1190577-8164-471d-b90f-6959f92bc25e
Scholte-Voshaar, Marieke
4ad0d309-0a76-448e-8e0b-3ed465f95f4d
Vlaskovska, Mila
502544a0-c942-466a-a73a-f0019ce89c6f
Reginster, Jean Yves
08b05e27-73dd-4ce9-90e5-d64ec922147a