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Digital Portals for Individuals with a Cancer Diagnosis: A Scoping Review Co-Led by a Patient Partner
ABSTRACT
Background:
Patient portals enable individuals to access their health information and data, facilitating self-management during outpatient care. Evidence highlights the impact of these digital portals on behavioral outcomes, but populations with cancer remain underexplored. These tools are generally associated with improvements in patient engagement and healthcare processes. However, their main functionalities, impact on various health outcomes, and accessibility across diverse populations remain insufficiently understood.
Objective:
This study aims to identify the main functionalities of portals used by individuals with cancer, as well as the categories of outcomes assessed, including those related to the healthcare system. Our secondary objectives were to: 1) describe the diversity of participant groups in oncology portal research, and 2) identify individual characteristics associated with portal use.
Methods:
We conducted a scoping review following JBI (formerly the Joanna Briggs Institute) guidelines, searching the Embase.com, Web of Science, Medline (Ovid), and CINAHL Plus with Full Text databases for studies published between 2014 and 2024. Pairs of reviewers independently screened titles and abstracts, applied the selection criteria, and performed full-text screening. The main inclusion criteria were participants with an active cancer diagnosis or a history of cancer, using a portal at home or in other outpatient settings, with access to personal health information, and with at least one outcome assessed. We excluded studies if they involved participants without a cancer diagnosis or mixed populations of cancer and non-cancer participants, where subgroup-specific results were not reported.
Results:
At the end of the selection process, we included 44 studies. Regarding the main functionalities, e-messaging was reported in 73% of studies and access to health services in 59%. Technology experience and behavioral outcomes were the most frequently assessed categories of outcomes, while clinical, biopsychosocial, and healthcare system outcomes received less focus. Breast cancer was the most studied type (16/44, 36%), with metastasis being a feature in 25% (11/44) and caregiver involvement in 18% (8/44). Additionally, 43% (19/44) of studies investigated PROGRESS-Plus factor associations with the portal use. Age (12/19, 63%) and socioeconomic status (10/19, 53%) were most frequently explored, while social capital (2/19, 11%), occupation (1/19, 5%), disability (1/19, 5%), and religion (0/19, 0%) were less or not reported.
Conclusions:
We showed the strong focus of studies on patient technology experience and behavioral outcomes, with limited exploration of healthcare system and clinical impacts. The current landscape in patient portals research for oncology underrepresent key equity-related factors and suggests a need for more inclusive research to optimize portal accessibility and usability for all individuals with cancer. Clinical Trial: Open Science Framework Registries (OSF) nrbt3; https://osf.io/nrbt3/
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Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.