@Article{info:doi/10.2196/63597,
author="Thiessen, Maclean
and Jewitt, Kellie
and Stromberg, Raina
and Lamontagne, Janelle Marie
and Richardson Tanguay, Genevieve
and Albo, Annette
and Thurston, Chantale
and McMillan, Diana E",
title="Constructing TheKeep.Ca With Thrivers of Cancer in Manitoba, Canada, in Support of Enhancing Patient Engagement: Protocol for a Pragmatic Multimethods Study",
journal="JMIR Res Protoc",
year="2025",
month="Jan",
day="29",
volume="14",
pages="e63597",
keywords="patient engagement; patient empowerment; translational research; patient recruitment; development and research; protocol; Manitoba; Canada; cancer; patient advisor; website; research platform; thematic analysis; semi-structured interview; online infrastructure",
abstract="Background: 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. Objective: 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? Methods: 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. Results: 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. Conclusions: 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 ",
issn="1929-0748",
doi="10.2196/63597",
url="https://www.researchprotocols.org/2025/1/e63597",
url="https://doi.org/10.2196/63597"
}