Establishing Effective Patient Engagement Through a Terms of Reference to Foster Inclusivity and Empowerment in Research: Example From a Healthcare Transition Quality Indicators Project
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Wiley
2024
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| author | Sarah E. P. Munce Tomisin John Dorothy Luong Sarah Mooney Lisa Stromquist Kyle Chambers Marilyn Crabtree Sanober Diaz Gina Dimitropoulos Megan Henze Amanda Higgins Elaine Li Samadhi Mora Severino Melanie Penner Jacklynn Pidduck Michelle Wan Laura Williams Darryl Yates Alene Toulany |
| author_facet | Sarah E. P. Munce Tomisin John Dorothy Luong Sarah Mooney Lisa Stromquist Kyle Chambers Marilyn Crabtree Sanober Diaz Gina Dimitropoulos Megan Henze Amanda Higgins Elaine Li Samadhi Mora Severino Melanie Penner Jacklynn Pidduck Michelle Wan Laura Williams Darryl Yates Alene Toulany Sarah E. P. Munce Tomisin John Dorothy Luong Sarah Mooney Lisa Stromquist Kyle Chambers Marilyn Crabtree Sanober Diaz Gina Dimitropoulos Megan Henze Amanda Higgins Elaine Li Samadhi Mora Severino Melanie Penner Jacklynn Pidduck Michelle Wan Laura Williams Darryl Yates Alene Toulany |
| collection | Wiley Open Access |
| contents | Establishing Effective Patient Engagement Through a Terms of Reference to Foster Inclusivity and Empowerment in Research: Example From a Healthcare Transition Quality Indicators Project Sarah E. P. Munce Tomisin John Dorothy Luong Sarah Mooney Lisa Stromquist Kyle Chambers Marilyn Crabtree Sanober Diaz Gina Dimitropoulos Megan Henze Amanda Higgins Elaine Li Samadhi Mora Severino Melanie Penner Jacklynn Pidduck Michelle Wan Laura Williams Darryl Yates Alene Toulany Health Expectations ABSTRACTIntroductionPatient engagement in research aims to foster meaningful partnerships, integrating patient experiences into the research process. This paper describes the development of a Terms of Reference (ToR) to support these meaningful partnerships. While engagement improves data collection and empowerment, ineffective engagement can lead to negative outcomes. A well‐developed ToR promotes a structured, inclusive, and respectful process.MethodsUsing an integrated knowledge translation (iKT) approach, we established a panel of youth, caregivers, healthcare providers, and healthcare leaders/decision‐makers. Through collaborative discussions, we incorporated key elements into the ToR, including values, roles, decision‐making processes, and recognition of contributions.ResultsTo promote effective engagement the ToR included sections to encourage open, transparent and vulnerable dialogue, evaluation, and accommodations for disabilities. The ToR draft was reviewed and refined by panel members for clarity. Regular reviews and updates will keep the ToR a living document and adaptable to the evolving engagement process.ConclusionThe implementation of our ToR is designed to foster inclusivity, mutual respect, and accountability, avoiding tokenistic partnership, enriching the experience for patients and researchers alike, and ultimately enhancing research quality. 10.1111/hex.70113 http://creativecommons.org/licenses/by/4.0/ |
| doi_str_mv | 10.1111/hex.70113 |
| format | Artículo Open Access |
| id | wiley_oa_10_1111_hex_70113 |
| institution | Wiley Open Access |
| license_str_mv | http://creativecommons.org/licenses/by/4.0/ |
| publishDate | 2024 |
| publisher | Wiley |
| record_format | wiley_oa |
| spellingShingle | Establishing Effective Patient Engagement Through a Terms of Reference to Foster Inclusivity and Empowerment in Research: Example From a Healthcare Transition Quality Indicators Project Sarah E. P. Munce Tomisin John Dorothy Luong Sarah Mooney Lisa Stromquist Kyle Chambers Marilyn Crabtree Sanober Diaz Gina Dimitropoulos Megan Henze Amanda Higgins Elaine Li Samadhi Mora Severino Melanie Penner Jacklynn Pidduck Michelle Wan Laura Williams Darryl Yates Alene Toulany Health Expectations Establishing Effective Patient Engagement Through a Terms of Reference to Foster Inclusivity and Empowerment in Research: Example From a Healthcare Transition Quality Indicators Project Sarah E. P. Munce Tomisin John Dorothy Luong Sarah Mooney Lisa Stromquist Kyle Chambers Marilyn Crabtree Sanober Diaz Gina Dimitropoulos Megan Henze Amanda Higgins Elaine Li Samadhi Mora Severino Melanie Penner Jacklynn Pidduck Michelle Wan Laura Williams Darryl Yates Alene Toulany Health Expectations ABSTRACTIntroductionPatient engagement in research aims to foster meaningful partnerships, integrating patient experiences into the research process. This paper describes the development of a Terms of Reference (ToR) to support these meaningful partnerships. While engagement improves data collection and empowerment, ineffective engagement can lead to negative outcomes. A well‐developed ToR promotes a structured, inclusive, and respectful process.MethodsUsing an integrated knowledge translation (iKT) approach, we established a panel of youth, caregivers, healthcare providers, and healthcare leaders/decision‐makers. Through collaborative discussions, we incorporated key elements into the ToR, including values, roles, decision‐making processes, and recognition of contributions.ResultsTo promote effective engagement the ToR included sections to encourage open, transparent and vulnerable dialogue, evaluation, and accommodations for disabilities. The ToR draft was reviewed and refined by panel members for clarity. Regular reviews and updates will keep the ToR a living document and adaptable to the evolving engagement process.ConclusionThe implementation of our ToR is designed to foster inclusivity, mutual respect, and accountability, avoiding tokenistic partnership, enriching the experience for patients and researchers alike, and ultimately enhancing research quality. 10.1111/hex.70113 http://creativecommons.org/licenses/by/4.0/ |
| title | Establishing Effective Patient Engagement Through a Terms of Reference to Foster Inclusivity and Empowerment in Research: Example From a Healthcare Transition Quality Indicators Project |
| topic | Health Expectations |
| url | https://onlinelibrary.wiley.com/doi/10.1111/hex.70113 |