Public Interest Group on Cancer Research: a successful patient–researcher partnership in Newfoundland and Labrador
BACKGROUND: Partnering with patients and family members affected by cancer is essential for meaningful research, public engagement and outreach, and advocacy activities. OBJECTIVE: Our objective was to create a public interest group through an academic–community partnership focused on cancer researc...
Published in: | Research Involvement and Engagement |
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BioMed Central
2022
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Online Access: | http://www.ncbi.nlm.nih.gov/pmc/articles/PMC9440646/ http://www.ncbi.nlm.nih.gov/pubmed/36057599 https://doi.org/10.1186/s40900-022-00380-8 |
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Research Savas, Sevtap Etchegary, Holly Stuckless, Teri Whitten, Cindy Wiseman, Jason Bishop, Derrick King, John Cutting, Janine Peddle, Darrell Public Interest Group on Cancer Research: a successful patient–researcher partnership in Newfoundland and Labrador |
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Research |
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BACKGROUND: Partnering with patients and family members affected by cancer is essential for meaningful research, public engagement and outreach, and advocacy activities. OBJECTIVE: Our objective was to create a public interest group through an academic–community partnership focused on cancer research and public engagement. METHODS: A purposeful recruitment process was implemented to ensure a diverse and inclusive group. The group meets virtually and communicates by email. The group’s activities focus on identifying the needs, priorities, and interests of cancer-affected individuals in the province; consultations; and designing research projects and public outreach activities together. Comprehensive meeting minutes are kept and used to distill discussion points. The work of the group is disseminated through a variety of channels. RESULTS: The public interest group includes 12 cancer patient and family member representatives, in addition to researchers. Discussions by the interest group identified key themes related to: (1) equity issues and regional disparity in provincial oncocare; (2) information needs; (3) need for patient empowerment and public understanding; and (4) family member and partner needs and experiences. To date, the group has co-designed a cancer research proposal and a public engagement/outreach activity. The group also provides consultations on cancer-related projects/public engagement activities and members act as patient partners in specific research and public engagement proposals. The group evolves over time, and increasingly advocates on behalf of cancer patients and families. Retention and satisfaction of the public partners with group activities have been high. The group’s work and findings are disseminated to the Provincial Cancer Care Program, as well as to public and scientific stakeholders through local media, academic conferences and presentations, and a dedicated website. CONCLUSION: Public Interest Group on Cancer Research represents a highly successful patient–researcher ... |
format |
Text |
author |
Savas, Sevtap Etchegary, Holly Stuckless, Teri Whitten, Cindy Wiseman, Jason Bishop, Derrick King, John Cutting, Janine Peddle, Darrell |
author_facet |
Savas, Sevtap Etchegary, Holly Stuckless, Teri Whitten, Cindy Wiseman, Jason Bishop, Derrick King, John Cutting, Janine Peddle, Darrell |
author_sort |
Savas, Sevtap |
title |
Public Interest Group on Cancer Research: a successful patient–researcher partnership in Newfoundland and Labrador |
title_short |
Public Interest Group on Cancer Research: a successful patient–researcher partnership in Newfoundland and Labrador |
title_full |
Public Interest Group on Cancer Research: a successful patient–researcher partnership in Newfoundland and Labrador |
title_fullStr |
Public Interest Group on Cancer Research: a successful patient–researcher partnership in Newfoundland and Labrador |
title_full_unstemmed |
Public Interest Group on Cancer Research: a successful patient–researcher partnership in Newfoundland and Labrador |
title_sort |
public interest group on cancer research: a successful patient–researcher partnership in newfoundland and labrador |
publisher |
BioMed Central |
publishDate |
2022 |
url |
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC9440646/ http://www.ncbi.nlm.nih.gov/pubmed/36057599 https://doi.org/10.1186/s40900-022-00380-8 |
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Newfoundland |
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Newfoundland |
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Newfoundland |
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Newfoundland |
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Res Involv Engagem |
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC9440646/ http://www.ncbi.nlm.nih.gov/pubmed/36057599 http://dx.doi.org/10.1186/s40900-022-00380-8 |
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© The Author(s) 2022 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data. |
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Research Involvement and Engagement |
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ftpubmed:oai:pubmedcentral.nih.gov:9440646 2023-05-15T17:22:42+02:00 Public Interest Group on Cancer Research: a successful patient–researcher partnership in Newfoundland and Labrador Savas, Sevtap Etchegary, Holly Stuckless, Teri Whitten, Cindy Wiseman, Jason Bishop, Derrick King, John Cutting, Janine Peddle, Darrell 2022-09-03 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC9440646/ http://www.ncbi.nlm.nih.gov/pubmed/36057599 https://doi.org/10.1186/s40900-022-00380-8 en eng BioMed Central http://www.ncbi.nlm.nih.gov/pmc/articles/PMC9440646/ http://www.ncbi.nlm.nih.gov/pubmed/36057599 http://dx.doi.org/10.1186/s40900-022-00380-8 © The Author(s) 2022 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data. CC0 PDM CC-BY Res Involv Engagem Research Text 2022 ftpubmed https://doi.org/10.1186/s40900-022-00380-8 2022-09-11T00:38:31Z BACKGROUND: Partnering with patients and family members affected by cancer is essential for meaningful research, public engagement and outreach, and advocacy activities. OBJECTIVE: Our objective was to create a public interest group through an academic–community partnership focused on cancer research and public engagement. METHODS: A purposeful recruitment process was implemented to ensure a diverse and inclusive group. The group meets virtually and communicates by email. The group’s activities focus on identifying the needs, priorities, and interests of cancer-affected individuals in the province; consultations; and designing research projects and public outreach activities together. Comprehensive meeting minutes are kept and used to distill discussion points. The work of the group is disseminated through a variety of channels. RESULTS: The public interest group includes 12 cancer patient and family member representatives, in addition to researchers. Discussions by the interest group identified key themes related to: (1) equity issues and regional disparity in provincial oncocare; (2) information needs; (3) need for patient empowerment and public understanding; and (4) family member and partner needs and experiences. To date, the group has co-designed a cancer research proposal and a public engagement/outreach activity. The group also provides consultations on cancer-related projects/public engagement activities and members act as patient partners in specific research and public engagement proposals. The group evolves over time, and increasingly advocates on behalf of cancer patients and families. Retention and satisfaction of the public partners with group activities have been high. The group’s work and findings are disseminated to the Provincial Cancer Care Program, as well as to public and scientific stakeholders through local media, academic conferences and presentations, and a dedicated website. CONCLUSION: Public Interest Group on Cancer Research represents a highly successful patient–researcher ... Text Newfoundland PubMed Central (PMC) Newfoundland Research Involvement and Engagement 8 1 |