Thiessen Maclean, Jewitt Kellie, Stromberg Raina, Lamontagne Janelle Marie, Richardson Tanguay Genevieve, Albo Annette, Thurston Chantale, McMillan Diana E
Section of Medical Oncology and Hematology/Department of Internal Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB, Canada.
CancerCare Manitoba, Winnipeg, MB, Canada.
JMIR Res Protoc. 2025 Jan 29;14:e63597. doi: 10.2196/63597.
TheKeep.Ca was built to facilitate engagement with those experiencing cancer in Manitoba, Canada. Constructed between 2020 and 2024 with a group of patient advisors, the website includes information on engagement activities including research participation, the patient advisor role, and how those experiencing cancer can access these Manitoba activities. A link allows visitors to register to be contacted about activities that match their demographics, cancer history, and activity preferences. After TheKeep.Ca was constructed, this protocol was developed to establish TheKeep.Ca as a platform for scientific research focused on optimally engaging those experiencing cancer.
We asked the following questions: (1) What was the patient advisors' experience who participated in developing TheKeep.Ca? (2) What are the baseline characteristics of website traffic and registrants at TheKeep.Ca? (3) How does registering with TheKeep.Ca impact the cancer experience?
The planned launch date for the website and initiation of research activities is January 2025. For objective 1, the active patient advisors (N=6) participating in the website project will be invited to participate in project activities including with responses to a question prompt sheet, semistructured audio-recorded interviews, or both. Responses and interviews will be analyzed using reflexive thematic analysis to understand and inform practices for patient engagement on projects. At the website launch, TheKeep.Ca will become publicly accessible and indexable on internet search engines, but no additional promotional interventions will take place in the initial 6 months resulting in visitors primarily from web search traffic. For objective 2, Google Analytics and website registrant data collected during the first six months will be analyzed to obtain baseline characteristics of website visitors. For objective 3, an online survey will be emailed to registrants six months after the website launch characterizing their website experience, the activities they participated in, and collecting feedback on the website. For objectives 2 and 3, quantitative data will be analyzed using both descriptive and inferential statistics, and qualitative data from open-ended questions will be analyzed using thematic analysis guided by an inductive descriptive semantic approach.
This study was approved by the University of Manitoba Health Research Ethics Board on December 12, 2024 (HS26614-H2024L263). Institutional approval from CancerCare Manitoba is pending as of December 23, 2024. Findings from objective 1 are expected to be finalized within the first six months after the website launch. Those from objectives 2 and 3 are expected by the 12-month mark. Reporting will include peer-reviewed journals, conferences, and a lay-language summary on TheKeep.Ca.
The research outlined in this protocol will facilitate understanding patient advisors' experience in developing TheKeep.Ca. It will also characterize the website' effectiveness and its impact on the cancer experience, providing a baseline and direction for future research and development.
INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/63597.
TheKeep.Ca网站旨在促进加拿大曼尼托巴省癌症患者的参与。该网站于2020年至2024年期间由一组患者顾问共同构建，包含有关参与活动的信息，包括研究参与、患者顾问角色，以及癌症患者如何参与曼尼托巴省的这些活动。一个链接允许访客注册，以便在有符合其人口统计学特征、癌症病史和活动偏好的活动时能被联系。在TheKeep.Ca网站建成后，制定了本方案，以将TheKeep.Ca打造成为一个专注于让癌症患者最佳参与的科研平台。
我们提出了以下问题：（1）参与TheKeep.Ca网站开发的患者顾问有何体验？（2）TheKeep.Ca网站流量和注册者的基线特征是什么？（3）在TheKeep.Ca网站注册对癌症体验有何影响？
该网站计划于2025年1月上线并启动研究活动。对于目标1，将邀请参与网站项目的在职患者顾问（N = 6）参与项目活动，包括回答问题提示单、进行半结构化录音访谈，或两者皆参与。将使用反思性主题分析法对回答和访谈进行分析，以了解并为项目中患者参与的实践提供信息。在网站上线时，TheKeep.Ca将在互联网搜索引擎上公开可访问且可索引，但在最初6个月内不会进行额外的推广干预，因此访客主要来自网络搜索流量。对于目标2，将分析前六个月收集的谷歌分析数据和网站注册者数据，以获取网站访客的基线特征。对于目标3，将在网站上线六个月后向注册者发送在线调查问卷，描述他们的网站体验、参与的活动，并收集对网站的反馈。对于目标2和3，将使用描述性和推断性统计分析定量数据，对于开放式问题的定性数据，将采用归纳描述语义方法指导的主题分析法进行分析。
本研究于2024年12月12日获得曼尼托巴大学健康研究伦理委员会批准（HS26614 - H2024L263）。截至2024年12月23日，曼尼托巴癌症护理机构的机构批准正在等待中。目标1的研究结果预计将在网站上线后的前六个月内完成。目标2和3的结果预计在12个月时得出。报告将包括同行评审期刊、会议以及TheKeep.Ca网站上的通俗语言总结。
本方案中概述的研究将有助于了解患者顾问在开发TheKeep.Ca网站方面的体验。它还将描述该网站的有效性及其对癌症体验的影响，为未来的研究和开发提供基线和方向。
国际注册报告标识符（IRRID）：PRR1 - 10.2196/63597
