How to build a framework to establish a patient research partner network in rheumatology research: a report of a 2-year implementation project
Background Patient research partners (PRPs) are people living with a relevant disease who actively contribute to research. Their contribution is beneficial for any research project. Although the inclusion of PRPs in rheumatology research is increasingly recommended, its practical implementation, par...
Saved in:
| Main Authors: | , , , , , , , , , , , , , , , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
BMJ Publishing Group
2025-02-01
|
| Series: | RMD Open |
| Online Access: | https://rmdopen.bmj.com/content/11/1/e005263.full |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1823859076652597248 |
|---|---|
| author | Maarten de Wit Oliver Distler Cosimo Bruni Anna-Maria Hoffmann-Vold Muriel Elhai Rucsandra Dobrota Adrian Ciurea Caroline Ospelt Raphael Micheroli Dania Diem Stefan Dudli Kristina Buerki Stacey Grealis Melpomeni Toitou Silke Ludwig Chantal Britt Florian Klett Isabelle Steeb Tanja Maletic Andreas Eisenring Penelope Jane Timpert-Argust Eva Camarillo-Retamosa |
| author_facet | Maarten de Wit Oliver Distler Cosimo Bruni Anna-Maria Hoffmann-Vold Muriel Elhai Rucsandra Dobrota Adrian Ciurea Caroline Ospelt Raphael Micheroli Dania Diem Stefan Dudli Kristina Buerki Stacey Grealis Melpomeni Toitou Silke Ludwig Chantal Britt Florian Klett Isabelle Steeb Tanja Maletic Andreas Eisenring Penelope Jane Timpert-Argust Eva Camarillo-Retamosa |
| author_sort | Maarten de Wit |
| collection | DOAJ |
| description | Background Patient research partners (PRPs) are people living with a relevant disease who actively contribute to research. Their contribution is beneficial for any research project. Although the inclusion of PRPs in rheumatology research is increasingly recommended, its practical implementation, particularly in translational research, remains limited . Enhancing PRP engagement requires a clear understanding of the necessary steps.Objective This study aims to show steps to achieve successful collaboration between PRPs and researchers in clinical and transitional research in rheumatology.Methods We established a PRP network by following five main steps: setting up infrastructure, recruitment, training, PRP involvement at an early stage, and ongoing support. We adhered to overall principles of openness, feedback, and regular evaluations to create a respectful and collaborative environment. The initiative was qualitatively assessed via an online questionnaire developed by each six researchers and PRPs.Results Communicating our initiative at laboratory open days and to patient associations has enabled to create a network of 66 PRPs. A match-making tool was introduced to allocate interested PRPs with a project request. This led to PRP involvement in 15 projects, including 9 in translational research. Two PRP-coordinators provided support including glossaries and educational courses .Conclusion Our initiative outlines five essential steps for establishing PRP collaboration in rheumatology research, including translational research. This approach benefited both PRPs and researchers and might serve as a guide for other centres. |
| format | Article |
| id | doaj-art-fb67c606a1634bfd92557ced583bb386 |
| institution | Kabale University |
| issn | 2056-5933 |
| language | English |
| publishDate | 2025-02-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | RMD Open |
| spelling | doaj-art-fb67c606a1634bfd92557ced583bb3862025-02-11T09:25:10ZengBMJ Publishing GroupRMD Open2056-59332025-02-0111110.1136/rmdopen-2024-005263How to build a framework to establish a patient research partner network in rheumatology research: a report of a 2-year implementation projectMaarten de Wit0Oliver Distler1Cosimo Bruni2Anna-Maria Hoffmann-Vold3Muriel Elhai4Rucsandra Dobrota5Adrian Ciurea6Caroline Ospelt7Raphael Micheroli8Dania Diem9Stefan Dudli10Kristina Buerki11Stacey Grealis12Melpomeni Toitou13Silke Ludwig14Chantal Britt15Florian Klett16Isabelle Steeb17Tanja Maletic18Andreas Eisenring19Penelope Jane Timpert-Argust20Eva Camarillo-Retamosa21Patient research partner, Amsterdam, the NetherlandsDepartment of Rheumatology, University Hospital Zurich, University of Zurich, Zurich, SwitzerlandDepartment of Rheumatology, University Hospital Zurich, University of Zurich, Zurich, SwitzerlandDepartment of Rheumatology, University Hospital Zurich, University of Zurich, Zurich, SwitzerlandDepartment of Rheumatology, University Hospital Zurich, University of Zurich, Zurich, SwitzerlandDepartment of Rheumatology, University Hospital Zurich, University of Zurich, Zurich, SwitzerlandDepartment of Rheumatology, University Hospital Zurich, University of Zurich, Zurich, SwitzerlandDepartment of Rheumatology, University Hospital Zurich, University of Zurich, Zurich, SwitzerlandDepartment of Rheumatology, University Hospital Zurich, University of Zurich, Zurich, SwitzerlandPatient Research Partner, Zurich, SwitzerlandDepartment of Physical Medicine and Rheumatology, Balgrist University Hospital, University of Zurich, Zurich, SwitzerlandDepartment of Rheumatology, University Hospital Zurich, University of Zurich, Zurich, SwitzerlandPatient Research Partner, Centre of Arthritis Research, University College Dublin (UCD), Dublin, IrelandDepartment of Rheumatology, University Hospital Zurich, University of Zurich, Zurich, SwitzerlandClinical Trial Center, University Hospital Zurich, University of Zurich, Zurich, SwitzerlandPatient Research Partner, Bern, SwitzerlandPatient Research Partner, Zurich, SwitzerlandRheumaliga, Patient Organisation, Patient Research Partner, Zurich, SwitzerlandSCQM, Swiss Clinical Quality Management, Patient Research Partner, Zurich, SwitzerlandPatient Research Partner, Zurich, SwitzerlandPatient Research Partner, Aargau, SwitzerlandDepartment of Rheumatology, University Hospital Zurich, University of Zurich, Zurich, SwitzerlandBackground Patient research partners (PRPs) are people living with a relevant disease who actively contribute to research. Their contribution is beneficial for any research project. Although the inclusion of PRPs in rheumatology research is increasingly recommended, its practical implementation, particularly in translational research, remains limited . Enhancing PRP engagement requires a clear understanding of the necessary steps.Objective This study aims to show steps to achieve successful collaboration between PRPs and researchers in clinical and transitional research in rheumatology.Methods We established a PRP network by following five main steps: setting up infrastructure, recruitment, training, PRP involvement at an early stage, and ongoing support. We adhered to overall principles of openness, feedback, and regular evaluations to create a respectful and collaborative environment. The initiative was qualitatively assessed via an online questionnaire developed by each six researchers and PRPs.Results Communicating our initiative at laboratory open days and to patient associations has enabled to create a network of 66 PRPs. A match-making tool was introduced to allocate interested PRPs with a project request. This led to PRP involvement in 15 projects, including 9 in translational research. Two PRP-coordinators provided support including glossaries and educational courses .Conclusion Our initiative outlines five essential steps for establishing PRP collaboration in rheumatology research, including translational research. This approach benefited both PRPs and researchers and might serve as a guide for other centres.https://rmdopen.bmj.com/content/11/1/e005263.full |
| spellingShingle | Maarten de Wit Oliver Distler Cosimo Bruni Anna-Maria Hoffmann-Vold Muriel Elhai Rucsandra Dobrota Adrian Ciurea Caroline Ospelt Raphael Micheroli Dania Diem Stefan Dudli Kristina Buerki Stacey Grealis Melpomeni Toitou Silke Ludwig Chantal Britt Florian Klett Isabelle Steeb Tanja Maletic Andreas Eisenring Penelope Jane Timpert-Argust Eva Camarillo-Retamosa How to build a framework to establish a patient research partner network in rheumatology research: a report of a 2-year implementation project RMD Open |
| title | How to build a framework to establish a patient research partner network in rheumatology research: a report of a 2-year implementation project |
| title_full | How to build a framework to establish a patient research partner network in rheumatology research: a report of a 2-year implementation project |
| title_fullStr | How to build a framework to establish a patient research partner network in rheumatology research: a report of a 2-year implementation project |
| title_full_unstemmed | How to build a framework to establish a patient research partner network in rheumatology research: a report of a 2-year implementation project |
| title_short | How to build a framework to establish a patient research partner network in rheumatology research: a report of a 2-year implementation project |
| title_sort | how to build a framework to establish a patient research partner network in rheumatology research a report of a 2 year implementation project |
| url | https://rmdopen.bmj.com/content/11/1/e005263.full |
| work_keys_str_mv | AT maartendewit howtobuildaframeworktoestablishapatientresearchpartnernetworkinrheumatologyresearchareportofa2yearimplementationproject AT oliverdistler howtobuildaframeworktoestablishapatientresearchpartnernetworkinrheumatologyresearchareportofa2yearimplementationproject AT cosimobruni howtobuildaframeworktoestablishapatientresearchpartnernetworkinrheumatologyresearchareportofa2yearimplementationproject AT annamariahoffmannvold howtobuildaframeworktoestablishapatientresearchpartnernetworkinrheumatologyresearchareportofa2yearimplementationproject AT murielelhai howtobuildaframeworktoestablishapatientresearchpartnernetworkinrheumatologyresearchareportofa2yearimplementationproject AT rucsandradobrota howtobuildaframeworktoestablishapatientresearchpartnernetworkinrheumatologyresearchareportofa2yearimplementationproject AT adrianciurea howtobuildaframeworktoestablishapatientresearchpartnernetworkinrheumatologyresearchareportofa2yearimplementationproject AT carolineospelt howtobuildaframeworktoestablishapatientresearchpartnernetworkinrheumatologyresearchareportofa2yearimplementationproject AT raphaelmicheroli howtobuildaframeworktoestablishapatientresearchpartnernetworkinrheumatologyresearchareportofa2yearimplementationproject AT daniadiem howtobuildaframeworktoestablishapatientresearchpartnernetworkinrheumatologyresearchareportofa2yearimplementationproject AT stefandudli howtobuildaframeworktoestablishapatientresearchpartnernetworkinrheumatologyresearchareportofa2yearimplementationproject AT kristinabuerki howtobuildaframeworktoestablishapatientresearchpartnernetworkinrheumatologyresearchareportofa2yearimplementationproject AT staceygrealis howtobuildaframeworktoestablishapatientresearchpartnernetworkinrheumatologyresearchareportofa2yearimplementationproject AT melpomenitoitou howtobuildaframeworktoestablishapatientresearchpartnernetworkinrheumatologyresearchareportofa2yearimplementationproject AT silkeludwig howtobuildaframeworktoestablishapatientresearchpartnernetworkinrheumatologyresearchareportofa2yearimplementationproject AT chantalbritt howtobuildaframeworktoestablishapatientresearchpartnernetworkinrheumatologyresearchareportofa2yearimplementationproject AT florianklett howtobuildaframeworktoestablishapatientresearchpartnernetworkinrheumatologyresearchareportofa2yearimplementationproject AT isabellesteeb howtobuildaframeworktoestablishapatientresearchpartnernetworkinrheumatologyresearchareportofa2yearimplementationproject AT tanjamaletic howtobuildaframeworktoestablishapatientresearchpartnernetworkinrheumatologyresearchareportofa2yearimplementationproject AT andreaseisenring howtobuildaframeworktoestablishapatientresearchpartnernetworkinrheumatologyresearchareportofa2yearimplementationproject AT penelopejanetimpertargust howtobuildaframeworktoestablishapatientresearchpartnernetworkinrheumatologyresearchareportofa2yearimplementationproject AT evacamarilloretamosa howtobuildaframeworktoestablishapatientresearchpartnernetworkinrheumatologyresearchareportofa2yearimplementationproject |