Involving patients as research partners in research in rheumatology : a literature review in 2023
© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ..
OBJECTIVE: The inclusion of patient research partners (PRPs) in research projects is increasingly recognised and recommended in rheumatology. The level of involvement of PRPs in translational research in rheumatology remains unknown, while in randomised clinical trials (RCTs), it has been reported to be 2% in 2020. Therefore, we aimed to assess the involvement of PRPs in recent translational studies and RCTs in rheumatology.
METHODS: We conducted a scoping literature review of the 80 most recent articles (40 translational studies and 40 RCTs) from four target diseases: rheumatoid arthritis, psoriatic arthritis, systemic lupus erythematosus and lower extremity osteoarthritis. We selected 20 papers from each disease, published up until 1 March 2023, in rheumatology and general scientific journals. In each paper, the extent of PRP involvement was assessed. Analyses were descriptive.
RESULTS: Of 40 translational studies, none reported PRP involvement. Of 40 RCTs, eight studies (20%) reported PRP involvement. These trials were mainly from Europe (75%) and North America (25%). Most of them (75%) were non-industry funded. The type of PRP involvement was reported in six of eight studies: six studies reported PRP participation in the study design or design of the intervention and two of them in the interpretation of the results. All the trials reporting the number of PRPs (75%), involved at least two PRPs.
CONCLUSION: Despite a worldwide movement advocating for increased patient involvement in research, PRPs in translational research and RCTs in rheumatology are significantly under-represented. This limited involvement of PRPs in research highlights a persistent gap between the existing recommendations and actual practice.
| Medienart: |
E-Artikel |
|---|
| Erscheinungsjahr: |
2023 |
|---|---|
| Erschienen: |
2023 |
| Enthalten in: |
Zur Gesamtaufnahme - volume:9 |
|---|---|
| Enthalten in: |
RMD open - 9(2023), 4 vom: 23. Nov. |
| Sprache: |
Englisch |
|---|
| Beteiligte Personen: |
Elhai, Muriel [VerfasserIn] |
|---|
| Links: |
|---|
| Themen: |
Epidemiology |
|---|
| Anmerkungen: |
Date Completed 27.11.2023 Date Revised 11.12.2023 published: Electronic Citation Status MEDLINE |
|---|
| doi: |
10.1136/rmdopen-2023-003566 |
|---|
| funding: |
|
|---|---|
| Förderinstitution / Projekttitel: |
|
| PPN (Katalog-ID): |
NLM364873825 |
|---|
| LEADER | 01000caa a22002652 4500 | ||
|---|---|---|---|
| 001 | NLM364873825 | ||
| 003 | DE-627 | ||
| 005 | 20231227132049.0 | ||
| 007 | cr uuu---uuuuu | ||
| 008 | 231226s2023 xx |||||o 00| ||eng c | ||
| 024 | 7 | |a 10.1136/rmdopen-2023-003566 |2 doi | |
| 028 | 5 | 2 | |a pubmed24n1226.xml |
| 035 | |a (DE-627)NLM364873825 | ||
| 035 | |a (NLM)37996123 | ||
| 035 | |a (PII)e003566 | ||
| 040 | |a DE-627 |b ger |c DE-627 |e rakwb | ||
| 041 | |a eng | ||
| 100 | 1 | |a Elhai, Muriel |e verfasserin |4 aut | |
| 245 | 1 | 0 | |a Involving patients as research partners in research in rheumatology |b a literature review in 2023 |
| 264 | 1 | |c 2023 | |
| 336 | |a Text |b txt |2 rdacontent | ||
| 337 | |a ƒaComputermedien |b c |2 rdamedia | ||
| 338 | |a ƒa Online-Ressource |b cr |2 rdacarrier | ||
| 500 | |a Date Completed 27.11.2023 | ||
| 500 | |a Date Revised 11.12.2023 | ||
| 500 | |a published: Electronic | ||
| 500 | |a Citation Status MEDLINE | ||
| 520 | |a © Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. | ||
| 520 | |a OBJECTIVE: The inclusion of patient research partners (PRPs) in research projects is increasingly recognised and recommended in rheumatology. The level of involvement of PRPs in translational research in rheumatology remains unknown, while in randomised clinical trials (RCTs), it has been reported to be 2% in 2020. Therefore, we aimed to assess the involvement of PRPs in recent translational studies and RCTs in rheumatology | ||
| 520 | |a METHODS: We conducted a scoping literature review of the 80 most recent articles (40 translational studies and 40 RCTs) from four target diseases: rheumatoid arthritis, psoriatic arthritis, systemic lupus erythematosus and lower extremity osteoarthritis. We selected 20 papers from each disease, published up until 1 March 2023, in rheumatology and general scientific journals. In each paper, the extent of PRP involvement was assessed. Analyses were descriptive | ||
| 520 | |a RESULTS: Of 40 translational studies, none reported PRP involvement. Of 40 RCTs, eight studies (20%) reported PRP involvement. These trials were mainly from Europe (75%) and North America (25%). Most of them (75%) were non-industry funded. The type of PRP involvement was reported in six of eight studies: six studies reported PRP participation in the study design or design of the intervention and two of them in the interpretation of the results. All the trials reporting the number of PRPs (75%), involved at least two PRPs | ||
| 520 | |a CONCLUSION: Despite a worldwide movement advocating for increased patient involvement in research, PRPs in translational research and RCTs in rheumatology are significantly under-represented. This limited involvement of PRPs in research highlights a persistent gap between the existing recommendations and actual practice | ||
| 650 | 4 | |a Review | |
| 650 | 4 | |a Journal Article | |
| 650 | 4 | |a Epidemiology | |
| 650 | 4 | |a Outcome and Process Assessment, Health Care | |
| 650 | 4 | |a Quality Indicators, Health Care | |
| 700 | 1 | |a Benavent, Diego |e verfasserin |4 aut | |
| 700 | 1 | |a Aouad, Krystel |e verfasserin |4 aut | |
| 700 | 1 | |a Studenic, Paul |e verfasserin |4 aut | |
| 700 | 1 | |a Bertheussen, Heidi |e verfasserin |4 aut | |
| 700 | 1 | |a Primdahl, Jette |e verfasserin |4 aut | |
| 700 | 1 | |a Zabalan, Codruta |e verfasserin |4 aut | |
| 700 | 1 | |a de Wit, Maarten |e verfasserin |4 aut | |
| 700 | 1 | |a Gossec, Laure |e verfasserin |4 aut | |
| 773 | 0 | 8 | |i Enthalten in |t RMD open |d 2015 |g 9(2023), 4 vom: 23. Nov. |w (DE-627)NLM254089658 |x 2056-5933 |7 nnns |
| 773 | 1 | 8 | |g volume:9 |g year:2023 |g number:4 |g day:23 |g month:11 |
| 856 | 4 | 0 | |u http://dx.doi.org/10.1136/rmdopen-2023-003566 |3 Volltext |
| 912 | |a GBV_USEFLAG_A | ||
| 912 | |a GBV_NLM | ||
| 951 | |a AR | ||
| 952 | |d 9 |j 2023 |e 4 |b 23 |c 11 | ||