Unmet need for patient involvement in rheumatology registries and observational studies: a mixed methods study
Objective The contribution of patient research partners (PRPs) is well established in EULAR recommendation development. However, in observational and registry studies, PRP involvement is not well-defined and remains limited.Methods Based on a round table discussion during the EULAR Registries and Ob...
| Main Authors: | , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
BMJ Publishing Group
2022-08-01
|
| Series: | RMD Open |
| Online Access: | https://rmdopen.bmj.com/content/8/2/e002472.full |
| _version_ | 1798042184636694528 |
|---|---|
| author | Loreto Carmona Maarten de Wit Paul Studenic Elena Nikiphorou Mandeep Sekhon |
| author_facet | Loreto Carmona Maarten de Wit Paul Studenic Elena Nikiphorou Mandeep Sekhon |
| author_sort | Loreto Carmona |
| collection | DOAJ |
| description | Objective The contribution of patient research partners (PRPs) is well established in EULAR recommendation development. However, in observational and registry studies, PRP involvement is not well-defined and remains limited.Methods Based on a round table discussion during the EULAR Registries and Observational Drug Studies (RODS) meeting in 2019, a mixed methods study was undertaken, including a survey to RODS participants and EULAR PRPs and focus groups with volunteers from the survey. An inductive thematic analysis approach was applied to qualitative data and descriptive statistics to survey data.Results We retrieved 45 survey responses and ran 3 focus groups with a total of 17 participants. The notion of PRP involvement in research was positively perceived by PRPs and the wider academic rheumatology community. There is universal agreement that PRP involvement in registry research is low and inclusion in different parts of the research cycle is limited. Potential benefits of PRP involvement include: input on the research objectives based on patients’ needs, advice and support regarding recruitment and retention strategies, obtaining patient views on analysis and interpretation, and assistance in disseminating results. Researchers and PRPs highlighted that education, inclusion of PRPs with diverse backgrounds and a welcoming environment as important facilitators for PRP involvement. On the other hand, preconceptions of researchers and insufficient budget allocation have been identified as barriers.Conclusion There is an unmet need to involve PRPs in registries and observational studies and to better define their required input during all research stages. This study provides suggestions for successful PRP integration. |
| first_indexed | 2024-04-11T22:31:57Z |
| format | Article |
| id | doaj.art-4fd53468deb54a7e86092f29cc822b3e |
| institution | Directory Open Access Journal |
| issn | 2056-5933 |
| language | English |
| last_indexed | 2024-04-11T22:31:57Z |
| publishDate | 2022-08-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | RMD Open |
| spelling | doaj.art-4fd53468deb54a7e86092f29cc822b3e2022-12-22T03:59:20ZengBMJ Publishing GroupRMD Open2056-59332022-08-018210.1136/rmdopen-2022-002472Unmet need for patient involvement in rheumatology registries and observational studies: a mixed methods studyLoreto Carmona0Maarten de Wit1Paul Studenic2Elena Nikiphorou3Mandeep Sekhon460 Instituto de Salud Musculoesquelética, Madrid, Spain5 EULAR Patient Research Partner, Amsterdam, NetherlandsDepartment of Rheumatology, Medical University of Vienna, Vienna, Austria19 Centre for Rheumatic Diseases, King`s College London, London, UKSchool of Population Health & Environmental Sciences, Faculty of Life Sciences and Medicine, King`s College London, London, UKObjective The contribution of patient research partners (PRPs) is well established in EULAR recommendation development. However, in observational and registry studies, PRP involvement is not well-defined and remains limited.Methods Based on a round table discussion during the EULAR Registries and Observational Drug Studies (RODS) meeting in 2019, a mixed methods study was undertaken, including a survey to RODS participants and EULAR PRPs and focus groups with volunteers from the survey. An inductive thematic analysis approach was applied to qualitative data and descriptive statistics to survey data.Results We retrieved 45 survey responses and ran 3 focus groups with a total of 17 participants. The notion of PRP involvement in research was positively perceived by PRPs and the wider academic rheumatology community. There is universal agreement that PRP involvement in registry research is low and inclusion in different parts of the research cycle is limited. Potential benefits of PRP involvement include: input on the research objectives based on patients’ needs, advice and support regarding recruitment and retention strategies, obtaining patient views on analysis and interpretation, and assistance in disseminating results. Researchers and PRPs highlighted that education, inclusion of PRPs with diverse backgrounds and a welcoming environment as important facilitators for PRP involvement. On the other hand, preconceptions of researchers and insufficient budget allocation have been identified as barriers.Conclusion There is an unmet need to involve PRPs in registries and observational studies and to better define their required input during all research stages. This study provides suggestions for successful PRP integration.https://rmdopen.bmj.com/content/8/2/e002472.full |
| spellingShingle | Loreto Carmona Maarten de Wit Paul Studenic Elena Nikiphorou Mandeep Sekhon Unmet need for patient involvement in rheumatology registries and observational studies: a mixed methods study RMD Open |
| title | Unmet need for patient involvement in rheumatology registries and observational studies: a mixed methods study |
| title_full | Unmet need for patient involvement in rheumatology registries and observational studies: a mixed methods study |
| title_fullStr | Unmet need for patient involvement in rheumatology registries and observational studies: a mixed methods study |
| title_full_unstemmed | Unmet need for patient involvement in rheumatology registries and observational studies: a mixed methods study |
| title_short | Unmet need for patient involvement in rheumatology registries and observational studies: a mixed methods study |
| title_sort | unmet need for patient involvement in rheumatology registries and observational studies a mixed methods study |
| url | https://rmdopen.bmj.com/content/8/2/e002472.full |
| work_keys_str_mv | AT loretocarmona unmetneedforpatientinvolvementinrheumatologyregistriesandobservationalstudiesamixedmethodsstudy AT maartendewit unmetneedforpatientinvolvementinrheumatologyregistriesandobservationalstudiesamixedmethodsstudy AT paulstudenic unmetneedforpatientinvolvementinrheumatologyregistriesandobservationalstudiesamixedmethodsstudy AT elenanikiphorou unmetneedforpatientinvolvementinrheumatologyregistriesandobservationalstudiesamixedmethodsstudy AT mandeepsekhon unmetneedforpatientinvolvementinrheumatologyregistriesandobservationalstudiesamixedmethodsstudy |