Researcher and patient experiences of co-presenting research to people living with systemic sclerosis at a patient conference: content analysis of interviews
Background Patient engagement in research is important to ensure research questions address problems important to patients, that research is designed in a way that can effectively answer those questions, and that findings are applicable, relevant, and credible. Yet, patients are rarely involved in t...
Ausführliche Beschreibung
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| Autor*in: |
Wurz, Amanda [verfasserIn] |
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| Format: |
E-Artikel |
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| Sprache: |
Englisch |
| Erschienen: |
2024 |
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| Anmerkung: |
© The Author(s) 2024 |
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| Übergeordnetes Werk: |
Enthalten in: Research involvement and engagement - London : BioMed Central, 2015, 10(2024), 1 vom: 27. Jan. |
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| Übergeordnetes Werk: |
volume:10 ; year:2024 ; number:1 ; day:27 ; month:01 |
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| DOI / URN: |
10.1186/s40900-024-00546-6 |
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| Katalog-ID: |
SPR054550297 |
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| 520 | |a Background Patient engagement in research is important to ensure research questions address problems important to patients, that research is designed in a way that can effectively answer those questions, and that findings are applicable, relevant, and credible. Yet, patients are rarely involved in the dissemination stage of research. This study explored one way to engage patients in dissemination, through co-presenting research. Methods Semi-structured, one-on-one, audio-recorded interviews were conducted with researchers and patients who co-presented research at one patient conference (the 2022 Canadian National Scleroderma Conference) in Canada. A pragmatic orientation was adopted, and following verbatim transcription, data were analyzed using conventional content analysis. Results Of 8 researchers who were paired with 7 patients, 5 researchers (mean age = 28 years, SD = 3.6 years) and 5 patients (mean age = 45 years, SD = 14.2 years) participated. Researcher and patient perspectives about their experiences co-presenting and how to improve the experience were captured across 4 main categories: (1) Reasons for accepting the invitation to co-present; (2) Degree that co-presenting expectations were met; (3) The process of co-presenting; and (4) Lessons learned: recommendations for co-presenting. Conclusions Findings from this study suggest that the co-presenting experience was a rewarding and enjoyable way to tailor research dissemination to patients. We identified a patient-centred approach and meaningful and prolonged patient engagement as essential elements underlying co-presenting success. | ||
| 520 | |a Plain English Summary Involving patients throughout the entire research process is important to ensure research effectively addresses problems important to patients and that findings are applicable, relevant, and credible. Yet, patients are rarely involved in the dissemination of research. We explored one way to engage patients in dissemination, through co-presenting research. We conducted one-on-one interviews with 5 researchers and 5 patients who co-presented research at a patient conference in Canada. Both researchers and patients indicated that the co-presenting experience was rewarding and enjoyable and a useful way to tailor dissemination to patients. We found that a patient-centred approach and meaningful and prolonged patient engagement were essential elements underlying co-presenting success. | ||
| 650 | 4 | |a Patient engagement |7 (dpeaa)DE-He213 | |
| 650 | 4 | |a Co-presentation |7 (dpeaa)DE-He213 | |
| 650 | 4 | |a Patient-oriented |7 (dpeaa)DE-He213 | |
| 650 | 4 | |a Dissemination |7 (dpeaa)DE-He213 | |
| 650 | 4 | |a Experiences |7 (dpeaa)DE-He213 | |
| 650 | 4 | |a Scleroderma |7 (dpeaa)DE-He213 | |
| 700 | 1 | |a Ellis, Kelsey |4 aut | |
| 700 | 1 | |a Nordlund, Julia |4 aut | |
| 700 | 1 | |a Carrier, Marie-Eve |4 aut | |
| 700 | 1 | |a Cook, Vanessa |4 aut | |
| 700 | 1 | |a Gietzen, Amy |4 aut | |
| 700 | 1 | |a Adams, Claire |4 aut | |
| 700 | 1 | |a Nassar, Elsa-Lynn |4 aut | |
| 700 | 1 | |a Rice, Danielle B. |4 aut | |
| 700 | 1 | |a Fortune, Catherine |4 aut | |
| 700 | 1 | |a Guillot, Genevieve |4 aut | |
| 700 | 1 | |a Mieszczak, Tracy |4 aut | |
| 700 | 1 | |a Richard, Michelle |4 aut | |
| 700 | 1 | |a Sauve, Maureen |4 aut | |
| 700 | 1 | |a Thombs, Brett D. |4 aut | |
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10.1186/s40900-024-00546-6 doi (DE-627)SPR054550297 (SPR)s40900-024-00546-6-e DE-627 ger DE-627 rakwb eng Wurz, Amanda verfasserin (orcid)0000-0002-7804-9811 aut Researcher and patient experiences of co-presenting research to people living with systemic sclerosis at a patient conference: content analysis of interviews 2024 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier © The Author(s) 2024 Background Patient engagement in research is important to ensure research questions address problems important to patients, that research is designed in a way that can effectively answer those questions, and that findings are applicable, relevant, and credible. Yet, patients are rarely involved in the dissemination stage of research. This study explored one way to engage patients in dissemination, through co-presenting research. Methods Semi-structured, one-on-one, audio-recorded interviews were conducted with researchers and patients who co-presented research at one patient conference (the 2022 Canadian National Scleroderma Conference) in Canada. A pragmatic orientation was adopted, and following verbatim transcription, data were analyzed using conventional content analysis. Results Of 8 researchers who were paired with 7 patients, 5 researchers (mean age = 28 years, SD = 3.6 years) and 5 patients (mean age = 45 years, SD = 14.2 years) participated. Researcher and patient perspectives about their experiences co-presenting and how to improve the experience were captured across 4 main categories: (1) Reasons for accepting the invitation to co-present; (2) Degree that co-presenting expectations were met; (3) The process of co-presenting; and (4) Lessons learned: recommendations for co-presenting. Conclusions Findings from this study suggest that the co-presenting experience was a rewarding and enjoyable way to tailor research dissemination to patients. We identified a patient-centred approach and meaningful and prolonged patient engagement as essential elements underlying co-presenting success. Plain English Summary Involving patients throughout the entire research process is important to ensure research effectively addresses problems important to patients and that findings are applicable, relevant, and credible. Yet, patients are rarely involved in the dissemination of research. We explored one way to engage patients in dissemination, through co-presenting research. We conducted one-on-one interviews with 5 researchers and 5 patients who co-presented research at a patient conference in Canada. Both researchers and patients indicated that the co-presenting experience was rewarding and enjoyable and a useful way to tailor dissemination to patients. We found that a patient-centred approach and meaningful and prolonged patient engagement were essential elements underlying co-presenting success. Patient engagement (dpeaa)DE-He213 Co-presentation (dpeaa)DE-He213 Patient-oriented (dpeaa)DE-He213 Dissemination (dpeaa)DE-He213 Experiences (dpeaa)DE-He213 Scleroderma (dpeaa)DE-He213 Ellis, Kelsey aut Nordlund, Julia aut Carrier, Marie-Eve aut Cook, Vanessa aut Gietzen, Amy aut Adams, Claire aut Nassar, Elsa-Lynn aut Rice, Danielle B. aut Fortune, Catherine aut Guillot, Genevieve aut Mieszczak, Tracy aut Richard, Michelle aut Sauve, Maureen aut Thombs, Brett D. aut Enthalten in Research involvement and engagement London : BioMed Central, 2015 10(2024), 1 vom: 27. Jan. (DE-627)835584860 (DE-600)2834246-X 2056-7529 nnns volume:10 year:2024 number:1 day:27 month:01 https://dx.doi.org/10.1186/s40900-024-00546-6 kostenfrei Volltext GBV_USEFLAG_A SYSFLAG_A GBV_SPRINGER GBV_ILN_11 GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_602 GBV_ILN_2003 GBV_ILN_2014 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 10 2024 1 27 01 |
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10.1186/s40900-024-00546-6 doi (DE-627)SPR054550297 (SPR)s40900-024-00546-6-e DE-627 ger DE-627 rakwb eng Wurz, Amanda verfasserin (orcid)0000-0002-7804-9811 aut Researcher and patient experiences of co-presenting research to people living with systemic sclerosis at a patient conference: content analysis of interviews 2024 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier © The Author(s) 2024 Background Patient engagement in research is important to ensure research questions address problems important to patients, that research is designed in a way that can effectively answer those questions, and that findings are applicable, relevant, and credible. Yet, patients are rarely involved in the dissemination stage of research. This study explored one way to engage patients in dissemination, through co-presenting research. Methods Semi-structured, one-on-one, audio-recorded interviews were conducted with researchers and patients who co-presented research at one patient conference (the 2022 Canadian National Scleroderma Conference) in Canada. A pragmatic orientation was adopted, and following verbatim transcription, data were analyzed using conventional content analysis. Results Of 8 researchers who were paired with 7 patients, 5 researchers (mean age = 28 years, SD = 3.6 years) and 5 patients (mean age = 45 years, SD = 14.2 years) participated. Researcher and patient perspectives about their experiences co-presenting and how to improve the experience were captured across 4 main categories: (1) Reasons for accepting the invitation to co-present; (2) Degree that co-presenting expectations were met; (3) The process of co-presenting; and (4) Lessons learned: recommendations for co-presenting. Conclusions Findings from this study suggest that the co-presenting experience was a rewarding and enjoyable way to tailor research dissemination to patients. We identified a patient-centred approach and meaningful and prolonged patient engagement as essential elements underlying co-presenting success. Plain English Summary Involving patients throughout the entire research process is important to ensure research effectively addresses problems important to patients and that findings are applicable, relevant, and credible. Yet, patients are rarely involved in the dissemination of research. We explored one way to engage patients in dissemination, through co-presenting research. We conducted one-on-one interviews with 5 researchers and 5 patients who co-presented research at a patient conference in Canada. Both researchers and patients indicated that the co-presenting experience was rewarding and enjoyable and a useful way to tailor dissemination to patients. We found that a patient-centred approach and meaningful and prolonged patient engagement were essential elements underlying co-presenting success. Patient engagement (dpeaa)DE-He213 Co-presentation (dpeaa)DE-He213 Patient-oriented (dpeaa)DE-He213 Dissemination (dpeaa)DE-He213 Experiences (dpeaa)DE-He213 Scleroderma (dpeaa)DE-He213 Ellis, Kelsey aut Nordlund, Julia aut Carrier, Marie-Eve aut Cook, Vanessa aut Gietzen, Amy aut Adams, Claire aut Nassar, Elsa-Lynn aut Rice, Danielle B. aut Fortune, Catherine aut Guillot, Genevieve aut Mieszczak, Tracy aut Richard, Michelle aut Sauve, Maureen aut Thombs, Brett D. aut Enthalten in Research involvement and engagement London : BioMed Central, 2015 10(2024), 1 vom: 27. Jan. (DE-627)835584860 (DE-600)2834246-X 2056-7529 nnns volume:10 year:2024 number:1 day:27 month:01 https://dx.doi.org/10.1186/s40900-024-00546-6 kostenfrei Volltext GBV_USEFLAG_A SYSFLAG_A GBV_SPRINGER GBV_ILN_11 GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_602 GBV_ILN_2003 GBV_ILN_2014 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 10 2024 1 27 01 |
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10.1186/s40900-024-00546-6 doi (DE-627)SPR054550297 (SPR)s40900-024-00546-6-e DE-627 ger DE-627 rakwb eng Wurz, Amanda verfasserin (orcid)0000-0002-7804-9811 aut Researcher and patient experiences of co-presenting research to people living with systemic sclerosis at a patient conference: content analysis of interviews 2024 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier © The Author(s) 2024 Background Patient engagement in research is important to ensure research questions address problems important to patients, that research is designed in a way that can effectively answer those questions, and that findings are applicable, relevant, and credible. Yet, patients are rarely involved in the dissemination stage of research. This study explored one way to engage patients in dissemination, through co-presenting research. Methods Semi-structured, one-on-one, audio-recorded interviews were conducted with researchers and patients who co-presented research at one patient conference (the 2022 Canadian National Scleroderma Conference) in Canada. A pragmatic orientation was adopted, and following verbatim transcription, data were analyzed using conventional content analysis. Results Of 8 researchers who were paired with 7 patients, 5 researchers (mean age = 28 years, SD = 3.6 years) and 5 patients (mean age = 45 years, SD = 14.2 years) participated. Researcher and patient perspectives about their experiences co-presenting and how to improve the experience were captured across 4 main categories: (1) Reasons for accepting the invitation to co-present; (2) Degree that co-presenting expectations were met; (3) The process of co-presenting; and (4) Lessons learned: recommendations for co-presenting. Conclusions Findings from this study suggest that the co-presenting experience was a rewarding and enjoyable way to tailor research dissemination to patients. We identified a patient-centred approach and meaningful and prolonged patient engagement as essential elements underlying co-presenting success. Plain English Summary Involving patients throughout the entire research process is important to ensure research effectively addresses problems important to patients and that findings are applicable, relevant, and credible. Yet, patients are rarely involved in the dissemination of research. We explored one way to engage patients in dissemination, through co-presenting research. We conducted one-on-one interviews with 5 researchers and 5 patients who co-presented research at a patient conference in Canada. Both researchers and patients indicated that the co-presenting experience was rewarding and enjoyable and a useful way to tailor dissemination to patients. We found that a patient-centred approach and meaningful and prolonged patient engagement were essential elements underlying co-presenting success. Patient engagement (dpeaa)DE-He213 Co-presentation (dpeaa)DE-He213 Patient-oriented (dpeaa)DE-He213 Dissemination (dpeaa)DE-He213 Experiences (dpeaa)DE-He213 Scleroderma (dpeaa)DE-He213 Ellis, Kelsey aut Nordlund, Julia aut Carrier, Marie-Eve aut Cook, Vanessa aut Gietzen, Amy aut Adams, Claire aut Nassar, Elsa-Lynn aut Rice, Danielle B. aut Fortune, Catherine aut Guillot, Genevieve aut Mieszczak, Tracy aut Richard, Michelle aut Sauve, Maureen aut Thombs, Brett D. aut Enthalten in Research involvement and engagement London : BioMed Central, 2015 10(2024), 1 vom: 27. Jan. (DE-627)835584860 (DE-600)2834246-X 2056-7529 nnns volume:10 year:2024 number:1 day:27 month:01 https://dx.doi.org/10.1186/s40900-024-00546-6 kostenfrei Volltext GBV_USEFLAG_A SYSFLAG_A GBV_SPRINGER GBV_ILN_11 GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_602 GBV_ILN_2003 GBV_ILN_2014 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 10 2024 1 27 01 |
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10.1186/s40900-024-00546-6 doi (DE-627)SPR054550297 (SPR)s40900-024-00546-6-e DE-627 ger DE-627 rakwb eng Wurz, Amanda verfasserin (orcid)0000-0002-7804-9811 aut Researcher and patient experiences of co-presenting research to people living with systemic sclerosis at a patient conference: content analysis of interviews 2024 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier © The Author(s) 2024 Background Patient engagement in research is important to ensure research questions address problems important to patients, that research is designed in a way that can effectively answer those questions, and that findings are applicable, relevant, and credible. Yet, patients are rarely involved in the dissemination stage of research. This study explored one way to engage patients in dissemination, through co-presenting research. Methods Semi-structured, one-on-one, audio-recorded interviews were conducted with researchers and patients who co-presented research at one patient conference (the 2022 Canadian National Scleroderma Conference) in Canada. A pragmatic orientation was adopted, and following verbatim transcription, data were analyzed using conventional content analysis. Results Of 8 researchers who were paired with 7 patients, 5 researchers (mean age = 28 years, SD = 3.6 years) and 5 patients (mean age = 45 years, SD = 14.2 years) participated. Researcher and patient perspectives about their experiences co-presenting and how to improve the experience were captured across 4 main categories: (1) Reasons for accepting the invitation to co-present; (2) Degree that co-presenting expectations were met; (3) The process of co-presenting; and (4) Lessons learned: recommendations for co-presenting. Conclusions Findings from this study suggest that the co-presenting experience was a rewarding and enjoyable way to tailor research dissemination to patients. We identified a patient-centred approach and meaningful and prolonged patient engagement as essential elements underlying co-presenting success. Plain English Summary Involving patients throughout the entire research process is important to ensure research effectively addresses problems important to patients and that findings are applicable, relevant, and credible. Yet, patients are rarely involved in the dissemination of research. We explored one way to engage patients in dissemination, through co-presenting research. We conducted one-on-one interviews with 5 researchers and 5 patients who co-presented research at a patient conference in Canada. Both researchers and patients indicated that the co-presenting experience was rewarding and enjoyable and a useful way to tailor dissemination to patients. We found that a patient-centred approach and meaningful and prolonged patient engagement were essential elements underlying co-presenting success. Patient engagement (dpeaa)DE-He213 Co-presentation (dpeaa)DE-He213 Patient-oriented (dpeaa)DE-He213 Dissemination (dpeaa)DE-He213 Experiences (dpeaa)DE-He213 Scleroderma (dpeaa)DE-He213 Ellis, Kelsey aut Nordlund, Julia aut Carrier, Marie-Eve aut Cook, Vanessa aut Gietzen, Amy aut Adams, Claire aut Nassar, Elsa-Lynn aut Rice, Danielle B. aut Fortune, Catherine aut Guillot, Genevieve aut Mieszczak, Tracy aut Richard, Michelle aut Sauve, Maureen aut Thombs, Brett D. aut Enthalten in Research involvement and engagement London : BioMed Central, 2015 10(2024), 1 vom: 27. Jan. (DE-627)835584860 (DE-600)2834246-X 2056-7529 nnns volume:10 year:2024 number:1 day:27 month:01 https://dx.doi.org/10.1186/s40900-024-00546-6 kostenfrei Volltext GBV_USEFLAG_A SYSFLAG_A GBV_SPRINGER GBV_ILN_11 GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_602 GBV_ILN_2003 GBV_ILN_2014 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 10 2024 1 27 01 |
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10.1186/s40900-024-00546-6 doi (DE-627)SPR054550297 (SPR)s40900-024-00546-6-e DE-627 ger DE-627 rakwb eng Wurz, Amanda verfasserin (orcid)0000-0002-7804-9811 aut Researcher and patient experiences of co-presenting research to people living with systemic sclerosis at a patient conference: content analysis of interviews 2024 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier © The Author(s) 2024 Background Patient engagement in research is important to ensure research questions address problems important to patients, that research is designed in a way that can effectively answer those questions, and that findings are applicable, relevant, and credible. Yet, patients are rarely involved in the dissemination stage of research. This study explored one way to engage patients in dissemination, through co-presenting research. Methods Semi-structured, one-on-one, audio-recorded interviews were conducted with researchers and patients who co-presented research at one patient conference (the 2022 Canadian National Scleroderma Conference) in Canada. A pragmatic orientation was adopted, and following verbatim transcription, data were analyzed using conventional content analysis. Results Of 8 researchers who were paired with 7 patients, 5 researchers (mean age = 28 years, SD = 3.6 years) and 5 patients (mean age = 45 years, SD = 14.2 years) participated. Researcher and patient perspectives about their experiences co-presenting and how to improve the experience were captured across 4 main categories: (1) Reasons for accepting the invitation to co-present; (2) Degree that co-presenting expectations were met; (3) The process of co-presenting; and (4) Lessons learned: recommendations for co-presenting. Conclusions Findings from this study suggest that the co-presenting experience was a rewarding and enjoyable way to tailor research dissemination to patients. We identified a patient-centred approach and meaningful and prolonged patient engagement as essential elements underlying co-presenting success. Plain English Summary Involving patients throughout the entire research process is important to ensure research effectively addresses problems important to patients and that findings are applicable, relevant, and credible. Yet, patients are rarely involved in the dissemination of research. We explored one way to engage patients in dissemination, through co-presenting research. We conducted one-on-one interviews with 5 researchers and 5 patients who co-presented research at a patient conference in Canada. Both researchers and patients indicated that the co-presenting experience was rewarding and enjoyable and a useful way to tailor dissemination to patients. We found that a patient-centred approach and meaningful and prolonged patient engagement were essential elements underlying co-presenting success. Patient engagement (dpeaa)DE-He213 Co-presentation (dpeaa)DE-He213 Patient-oriented (dpeaa)DE-He213 Dissemination (dpeaa)DE-He213 Experiences (dpeaa)DE-He213 Scleroderma (dpeaa)DE-He213 Ellis, Kelsey aut Nordlund, Julia aut Carrier, Marie-Eve aut Cook, Vanessa aut Gietzen, Amy aut Adams, Claire aut Nassar, Elsa-Lynn aut Rice, Danielle B. aut Fortune, Catherine aut Guillot, Genevieve aut Mieszczak, Tracy aut Richard, Michelle aut Sauve, Maureen aut Thombs, Brett D. aut Enthalten in Research involvement and engagement London : BioMed Central, 2015 10(2024), 1 vom: 27. Jan. (DE-627)835584860 (DE-600)2834246-X 2056-7529 nnns volume:10 year:2024 number:1 day:27 month:01 https://dx.doi.org/10.1186/s40900-024-00546-6 kostenfrei Volltext GBV_USEFLAG_A SYSFLAG_A GBV_SPRINGER GBV_ILN_11 GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_602 GBV_ILN_2003 GBV_ILN_2014 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 10 2024 1 27 01 |
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researcher and patient experiences of co-presenting research to people living with systemic sclerosis at a patient conference: content analysis of interviews |
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Researcher and patient experiences of co-presenting research to people living with systemic sclerosis at a patient conference: content analysis of interviews |
| abstract |
Background Patient engagement in research is important to ensure research questions address problems important to patients, that research is designed in a way that can effectively answer those questions, and that findings are applicable, relevant, and credible. Yet, patients are rarely involved in the dissemination stage of research. This study explored one way to engage patients in dissemination, through co-presenting research. Methods Semi-structured, one-on-one, audio-recorded interviews were conducted with researchers and patients who co-presented research at one patient conference (the 2022 Canadian National Scleroderma Conference) in Canada. A pragmatic orientation was adopted, and following verbatim transcription, data were analyzed using conventional content analysis. Results Of 8 researchers who were paired with 7 patients, 5 researchers (mean age = 28 years, SD = 3.6 years) and 5 patients (mean age = 45 years, SD = 14.2 years) participated. Researcher and patient perspectives about their experiences co-presenting and how to improve the experience were captured across 4 main categories: (1) Reasons for accepting the invitation to co-present; (2) Degree that co-presenting expectations were met; (3) The process of co-presenting; and (4) Lessons learned: recommendations for co-presenting. Conclusions Findings from this study suggest that the co-presenting experience was a rewarding and enjoyable way to tailor research dissemination to patients. We identified a patient-centred approach and meaningful and prolonged patient engagement as essential elements underlying co-presenting success. Plain English Summary Involving patients throughout the entire research process is important to ensure research effectively addresses problems important to patients and that findings are applicable, relevant, and credible. Yet, patients are rarely involved in the dissemination of research. We explored one way to engage patients in dissemination, through co-presenting research. We conducted one-on-one interviews with 5 researchers and 5 patients who co-presented research at a patient conference in Canada. Both researchers and patients indicated that the co-presenting experience was rewarding and enjoyable and a useful way to tailor dissemination to patients. We found that a patient-centred approach and meaningful and prolonged patient engagement were essential elements underlying co-presenting success. © The Author(s) 2024 |
| abstractGer |
Background Patient engagement in research is important to ensure research questions address problems important to patients, that research is designed in a way that can effectively answer those questions, and that findings are applicable, relevant, and credible. Yet, patients are rarely involved in the dissemination stage of research. This study explored one way to engage patients in dissemination, through co-presenting research. Methods Semi-structured, one-on-one, audio-recorded interviews were conducted with researchers and patients who co-presented research at one patient conference (the 2022 Canadian National Scleroderma Conference) in Canada. A pragmatic orientation was adopted, and following verbatim transcription, data were analyzed using conventional content analysis. Results Of 8 researchers who were paired with 7 patients, 5 researchers (mean age = 28 years, SD = 3.6 years) and 5 patients (mean age = 45 years, SD = 14.2 years) participated. Researcher and patient perspectives about their experiences co-presenting and how to improve the experience were captured across 4 main categories: (1) Reasons for accepting the invitation to co-present; (2) Degree that co-presenting expectations were met; (3) The process of co-presenting; and (4) Lessons learned: recommendations for co-presenting. Conclusions Findings from this study suggest that the co-presenting experience was a rewarding and enjoyable way to tailor research dissemination to patients. We identified a patient-centred approach and meaningful and prolonged patient engagement as essential elements underlying co-presenting success. Plain English Summary Involving patients throughout the entire research process is important to ensure research effectively addresses problems important to patients and that findings are applicable, relevant, and credible. Yet, patients are rarely involved in the dissemination of research. We explored one way to engage patients in dissemination, through co-presenting research. We conducted one-on-one interviews with 5 researchers and 5 patients who co-presented research at a patient conference in Canada. Both researchers and patients indicated that the co-presenting experience was rewarding and enjoyable and a useful way to tailor dissemination to patients. We found that a patient-centred approach and meaningful and prolonged patient engagement were essential elements underlying co-presenting success. © The Author(s) 2024 |
| abstract_unstemmed |
Background Patient engagement in research is important to ensure research questions address problems important to patients, that research is designed in a way that can effectively answer those questions, and that findings are applicable, relevant, and credible. Yet, patients are rarely involved in the dissemination stage of research. This study explored one way to engage patients in dissemination, through co-presenting research. Methods Semi-structured, one-on-one, audio-recorded interviews were conducted with researchers and patients who co-presented research at one patient conference (the 2022 Canadian National Scleroderma Conference) in Canada. A pragmatic orientation was adopted, and following verbatim transcription, data were analyzed using conventional content analysis. Results Of 8 researchers who were paired with 7 patients, 5 researchers (mean age = 28 years, SD = 3.6 years) and 5 patients (mean age = 45 years, SD = 14.2 years) participated. Researcher and patient perspectives about their experiences co-presenting and how to improve the experience were captured across 4 main categories: (1) Reasons for accepting the invitation to co-present; (2) Degree that co-presenting expectations were met; (3) The process of co-presenting; and (4) Lessons learned: recommendations for co-presenting. Conclusions Findings from this study suggest that the co-presenting experience was a rewarding and enjoyable way to tailor research dissemination to patients. We identified a patient-centred approach and meaningful and prolonged patient engagement as essential elements underlying co-presenting success. Plain English Summary Involving patients throughout the entire research process is important to ensure research effectively addresses problems important to patients and that findings are applicable, relevant, and credible. Yet, patients are rarely involved in the dissemination of research. We explored one way to engage patients in dissemination, through co-presenting research. We conducted one-on-one interviews with 5 researchers and 5 patients who co-presented research at a patient conference in Canada. Both researchers and patients indicated that the co-presenting experience was rewarding and enjoyable and a useful way to tailor dissemination to patients. We found that a patient-centred approach and meaningful and prolonged patient engagement were essential elements underlying co-presenting success. © The Author(s) 2024 |
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Researcher and patient experiences of co-presenting research to people living with systemic sclerosis at a patient conference: content analysis of interviews |
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Ellis, Kelsey Nordlund, Julia Carrier, Marie-Eve Cook, Vanessa Gietzen, Amy Adams, Claire Nassar, Elsa-Lynn Rice, Danielle B. Fortune, Catherine Guillot, Genevieve Mieszczak, Tracy Richard, Michelle Sauve, Maureen Thombs, Brett D. |
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Ellis, Kelsey Nordlund, Julia Carrier, Marie-Eve Cook, Vanessa Gietzen, Amy Adams, Claire Nassar, Elsa-Lynn Rice, Danielle B. Fortune, Catherine Guillot, Genevieve Mieszczak, Tracy Richard, Michelle Sauve, Maureen Thombs, Brett D. |
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