Accepted for/Published in: JMIR Research Protocols
Date Submitted: Jun 28, 2024
Date Accepted: Dec 11, 2024
Constructing TheKeep.Ca with Cancer Thrivers in Manitoba, Canada in Support of Enhancing Patient Engagement: A Pragmatic Multi-Methods Protocol
ABSTRACT
Background:
TheKeep.Ca was built to facilitate engagement with those experiencing cancer in Manitoba, Canada. Constructed between 2020 - 2024 with a group of patient advisors, website content includes information on engagement activities including research participation, the patient advisor role, and how those experiencing cancer can access these activities in Manitoba. A link provides website visitors with an opportunity 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 with those experiencing cancer.
Objective:
1) What was the experience of the patient advisors 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 provide written responses to a question prompt sheet and/or participate in semi-structured audio recorded interviews exploring their experience with the project. Written responses and transcribed interviews will be analyzed using reflexive thematic analysis to understand the experience and inform practices for patient engagement on complex and lengthy projects. At 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 six months resulting in website traffic and registrants primarily coming 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 traffic and the population registering on the website. For objective 3, an online survey will be distributed via email to registrants six months after website launch characterizing their experience with the website, the engagement activities they participated in, and collecting feedback on the website to inform future development. For objectives 2 and 3, quantitative data will be analyzed using both descriptive and inferential statistics, qualitative data from open ended questions will be analyzed using thematic analysis guided by an inductive descriptive semantic approach.
Results:
Findings from objective 1 are expected to be finalized within the first six months after 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 of the experience of patient advisors in developing TheKeep.Ca. It will also characterize the effectiveness of the website and its impact on the cancer experience, providing a baseline and direction for future research and development.
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