Thinking critically about cancer misinformation: The Informed Health Choice-Cancer (IHC-C) programme

Introduction Cancer remains one of the leading causes of death worldwide, with incidence rates expected to continue to rise. As digital technology evolves, those impacted by cancer increasingly turn to online resources to support their health choices, with approximately one in three people actively seeking health-related information online. However, amid the ongoing ‘infodemic’ where false or misleading content circulates widely, the quality of cancer-related information has become a major concern. Evidence suggests that nearly one in three pieces of cancer-related content contains misinformation, posing significant challenges to individuals’ ability to access trustworthy and accurate health content. This undermines informed decision-making, influences health behaviours, and erodes public trust. Limited public health literacy and a general lack of skills in critically appraising health claims further amplifies the risks posed by misinformation. At the individual level, misinformation can delay appropriate treatment and lead to avoidable harm, including death; at the population level, it can distort public attitudes, behaviours, and health policies, ultimately undermining the collective capacity to make informed health choices. In response, there is an urgent need for accessible interventions that strengthen health literacy and critical thinking, both of which are essential for navigating an increasingly complex health information landscape and mitigating the harmful effects of misinformation. Aim and Objectives This research aims to develop and test an online educational programme called Informed Health Choices-Cancer, designed to equip individuals impacted by cancer with the skills and knowledge necessary to think critically about the reliability of health claims and make well-informed choices. The research objectives are to: 1) prioritise and identify the most relevant Key Concepts from the Informed Health Choices framework for those impacted by cancer; 2) based on the prioritised Key Concepts, create a plain-language, cancer-centred learning resource through an iterative process that incorporates input from individuals impacted by cancer; and 3) design a pilot randomised trial to assess the feasibility and acceptability of the learning resource as an intervention to enhance health literacy, critical thinking, and decision-making regarding cancer and health information. Methods A mixed-method approach was used to address the research objectives. To address objective one, a structured two-round prioritisation process was conducted to identify the most relevant Key Concepts for those impacted by cancer, collaborating with key stakeholders from both a patient and public involvement group (including cancer patients, survivors, caregivers, and loved ones) and a multidisciplinary steering group (composed of healthcare professionals, educationalists, and researchers). Participants received pre-reading materials and attended training sessions to familiarise themselves with the Key Concepts and the prioritisation process. Each concept was evaluated using a standardised judgement form. Quantitative and qualitative data from each prioritisation round were analysed to reach a consensus on the final set of concepts selected for inclusion. To address objective two, a human-centred design approach incorporating iterative refinement was used to co-develop the learning resource. Guided by the prioritised Key Concepts, structured templates were initially developed to define the overall architecture of the learning resource, including unit structure, learning outcomes, the need for tailored cancer-specific content, and appropriate multimedia formats. One prioritised Key Concept was expanded into a prototype unit, and an iterative cycle of drafting, reviewing, revising, and refining was conducted to ensure rigorous educational standards and effective communication of intended learning outcomes. The prototype was then pilot tested with key stakeholders from the prioritisation phase to assess accessibility, usability, and real-life relevance. Feedback was systematically incorporated to refine both the prototype unit and the templates. Subsequently, the remaining units were developed using the refined templates as a guide. The same iterative cycle of drafting, reviewing, revising, and refining was conducted, and the complete learning resource was integrated into an online learning platform. It was further evaluated through two successive pilot tests: first with small stakeholder groups and subsequently with a broader sample, including newly recruited patient and public involvement participants. Quantitative ratings and qualitative feedback were collected and used to assess and enhance the accessibility, usability, and practical relevance of the learning resource. To address objective three, a pilot randomised trial was designed to evaluate the feasibility and acceptability of delivering the Informed Health Choices-Cancer learning resource and to inform the design of a future definitive trial. The trial design defines participant recruitment strategies, randomisation procedures, control group allocation, the selection of primary and secondary outcomes, demographic data collection, and data analysis methods. Findings Objective one: Thirty-five participants, including those impacted by cancer, healthcare professionals, educationalists, and researchers, took part in five training sessions and two rounds of a structured prioritisation process. Through two consensus meetings, the original list of 49 Key Concepts was initially narrowed down to 21 and ultimately reduced to a final set of nine. These nine concepts were identified as the most relevant to the needs and experiences of those impacted by cancer. Objective two: Structured templates were created to guide the design of the learning resource and its individual units. Fourteen participants who were impacted by cancer, completed the initial pilot testing of the prototype unit. The results showed alignment of the learning resource with intended learning outcomes, clarity of content, and relevance to users’ needs. Qualitative feedback indicated a need for further simplification of language, prompting refinements to both the prototype and the templates. The revised templates were then used to develop all remaining units. Nineteen individuals impacted by cancer participated in two rounds of pilot testing. Over 80% of participants found the overall learning resource ‘very well aligned’ with the learning outcomes, ‘very easy to understand’, ‘very relevant’ to the needs of individuals impacted by cancer, and ‘very easy to navigate’. The final version of the resource was also perceived as useful in supporting critical thinking, facilitating informed decision-making, and reflecting the real-world experiences of individuals impacted by cancer. Objective three: The pilot randomised trial has been designed and is ongoing. Participants are being recruited through both traditional and online channels and randomised to either the Informed Health Choices-Cancer intervention or a waitlist control group. Primary outcomes include feasibility metrics such as recruitment and retention rates, while secondary outcomes assess acceptability, such as participant satisfaction and perceived usefulness. Demographic and cancer-related data are being collected to characterise the cohort and support future recruitment planning. Preliminary measures of health literacy, critical thinking, and decision-making skills are also being gathered to inform outcome selection for the future trial. Conclusion The findings from this research demonstrate the development, feasibility, accessibility, and acceptability of the Informed Health Choices-Cancer learning resource as an educational intervention for individuals impacted by cancer. The structured prioritisation process effectively identified Key Concepts most relevant to this population. The iterative user-centred design approach resulted in a structured learning resource that was well received for its clarity, usability, and relevance to users’ real-world needs. Pilot testing is planned to provide preliminary evidence on the resource’s potential to improve health literacy and critical thinking, empower informed health choices, and reducing vulnerability to cancer-related misinformation. As a practical, accessible, and evidence-informed tool, the Informed Health Choices-Cancer programme offers a novel approach to integrate health literacy and critical thinking education into cancer care, supporting more informed health choices. These findings provide a solid foundation for a future definitive trial to evaluate the effectiveness of the Informed Health Choices-Cancer learning programme on critical thinking, eHealth literacy, and decision-making skills.

Publisher

University of Galway

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CC BY-NC-ND

cbn

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University of Galway Theses (PhD Theses)