Abstract
Background
Nearly half of all cancer deaths are preventable through modification or avoidance of key risk factors. As such, there is a growing urgency to identify effective, low-resource, and scalable technologies that support clinical care and patient self-management of health behaviors.
Purpose
Informed by theories of cognitive load and user-centered design approaches, we develop a culturally tailored, multicomponent digital intervention to engage rural adults between 50-73 years old with their personalized nutrition risk factors for colorectal cancer (CRC) prevention.
Method
A total of 48 adults tested a Virtual Health Assistant (VHA) prototype during focus groups in individual think-aloud interviews to facilitate iterative adaptations to a web-based CRC prevention intervention. Qualitative data was analyzed to identify user needs and preferences related to information and with a focus on avoiding cognitive overload.
Results
The VHA serves as a conceptual pre-training for users helping them understand CRC prevention key concepts and engendering motivation to act on the promoted behavior. A website was identified as a strategy to fill information gaps and present actionable information, after the VHA interaction. Cognitive load reducing strategies were used including segmenting where information is presented in learner-controlled segments rather than continuously.
Conclusions
Findings indicate potential benefits of designing CRC prevention information technologies with the rural older adults. Integrating patient-centered needs before launching health information web content will be important as the rapid growth of telemedicine aims to reach traditionally marginalized and underserved populations. Theoretically informed considerations for potential adverse outcomes (eg, information overload) are discussed.
Keywords
There is a growing urgency to identify effective, low-resource, and scalable technologies that support clinical care and patient self-management of health behaviors. It is estimated that in 2021 over 600 000 people will die of cancer in the United States. 1 However, data indicates that nearly half of all cancer deaths are preventable through modification or avoidance of key risk factors, many of which are related to diet and behavior. 2 For example, routine screening for colorectal cancer (CRC) can dramatically reduce population disease burden, yet in 2018 only 69% of eligible adults were adherent to CRC screening guidelines.3,4 Further, upwards of 6% of worldwide cancer deaths have been attributed to alcohol consumption. 5 Red and processed meats have also been classified as having carcinogenic properties, with consumption positively associated with various cancers.6-8 Given the impact of health behavior changes on cancer risk, research that focuses on enhancing the design of health information and communication technologies to facilitate adoption and use is urgently needed.
The current paper is part of a larger pilot study to develop and test an interactive, web-based, nutrition risk intervention delivered by a virtual health assistant titled; “Reporting Nutrition Risk Factors via Virtual Humans for Colorectal Cancer Prevention”. The pilot study is based on construal level theory3434 and is designed to engage rural adults who are non-adherent with recommended CRC screening guidelines with their proximal nutrition risk factors for CRC (ie, alcohol, red meat, processed meat). The theory, and research exploring its role in behaviors, suggest that bringing a risk closer may impact behavior or attitude change.3535 Thus, daily dietary intake is posed to bring the distant risk of CRC psychologically closer to promote screening intentions.
Using Health Technologies for Cancer Prevention
Developing strategic messages to promote health behaviors is particularly critical for populations underrepresented in clinical research. Rural patient populations have therefore been identified as a priority group for precision health communication research. Often facing structural barriers to care, rural patients experience significant cancer disparities, including higher incidence of cancer types with modifiable risk factors and preventive screening options, including CRC.9,10 Rural patients are also less likely to be up to date with cancer screenings.11,12 Advancements in digital health interventions can serve as a critical component in building capacity to address CRC disparities based on geography as this technology can be delivered remotely, and in a manner that is both convenient and cost-effective.
However, despite perceptions that the “digital divide,” defined as disparities in access, skills, and benefits to and from web-based technology,13,14 precludes rural patients from engaging with technology-based health interventions, there are growing efforts to build the technology-based eHealth infrastructure (eg, telemedicine access, electronic health records, patient portals, virtual health assistants) to support health in rural areas.15-18 These emerging interventions can be most useful if developed with community-engaged input to address unique needs of rural populations. Virtual Health Assistants (VHAs) are animated, virtual characters that can be adapted to deliver tailored messages and may be useful to aid information processing and address cognitive load considerations when designing health information technologies for an aging rural population. VHAs have been found to be effective in addressing various health behaviors, including alcohol consumption, personal fitness, and nutrition,19-21 and may be particularly successful in educating rural patients about cancer. 22 Previous research explored older adults’ processing of cancer-related information on a website and found that information recall improved when older adults felt emotionally supported by a website (eg, defined as the extent the user perceives the website helps them deal with emotions and stress). 23 Findings such as this cue the importance of exploring website design with a focus on the information needs and processing of older rural adults.
Six steps for making a user-friendly health website outlined in a publication from the Office of Disease Prevention and Health Promotion and the U.S. Department of Health and Human Services suggest the following: (1) learn about your users and their goals, (2) write actionable content, (3) display content clearly on the page, (4) organize content and simplify navigation, (5) engage users with interactive content, and (6) evaluate and revise your site. 24 Additionally, because rural adults – particularly older rural adults who are at increased risk for new cancers – may experience difficulties processing new information, participatory approaches to managing information processing should be considered during the design of web-based health information technologies.
Cognitive Load Theory
Cognitive load theory explores how individual cognitive processing occurs during a learning activity. 25 Processing can be impacted by three types of cognitive load: intrinsic cognitive load (cognitive requirements of the task at hand), extraneous cognitive load (unnecessary cognitive load caused by design or information), and germane cognitive load (the effort necessary to process the information being added to prior knowledge). 26 A core tenet of cognitive load theory is that the capacity to process and store new information is limited; also, the duplicated presentation of multimodal information (eg, showing a figure and then showing descriptive text) can tax cognitive capacity. 26 Design experts stress that cognitive load should be a central consideration in multimodal information design to promote effective learning and problem-solving. 27
The cognitive processing of risk information delivered via health information technologies should also account for pre-existing user knowledge. VHAs can be adapted to a user’s specific knowledge base towards the aim of supporting retention and uptake of cancer risk and screening information.28,29 However, little is known about the mechanisms involved in learning from a VHA and how those mechanisms might be leveraged to better promote behavior change within a VHA-led intervention. For this, a more recent iteration of cognitive load theory 30 known as the cognitive theory of multimedia learning, 31 can be used to explore VHA-guided learning and decision making. Per this theory, we define learning as an active process of filtering, selecting, organizing, and integrating information based upon prior knowledge. 23 To optimize learning, it is key to consider how design aspects affect a user’s cognitive load to prevent cognitive overload (eg, when a learner’s available processing capacity is exceeded).
Information Overload
Information overload can be caused by excessive or contradictory sources of information. At the individual level, information overload occurs when an excess of information (more than can be managed effectively) creates a degree of stress against which one’s coping strategies are ineffective. 24 In their review of literature, Bawden &Robinson 32 posit that information overload occurs “when information received becomes a hindrance rather than a help, even though the information is potentially useful.”(p. 183) Information overload may lead to adverse outcomes for information-seekers 33 such as anxiety, 34 information avoidance, discontinuing a search,35-37 or “the inability to connect new information to prior knowledge.”38(p104)Nine strategies have been established based on experimental studies to manage cognitive load through information design (see Table 4 for an overview of strategies). 19
Purpose Statement and Research Questions
This study highlights the user-centered development of a digital cancer prevention resource. The purpose is to accommodate older rural adults' requests for additional cancer prevention information after they interact with a tailored web-based, VHA-delivered cancer risk intervention. Informed by theories of information overload and user-centered approaches for designing health information technology, we answer the following research questions: after testing a brief VHA-delivered, web-based intervention discussing nutrition risk factors for colorectal cancer; (1) what user-generated requests for more information emerge and (2) what content and design strategies can be incorporated into a supplemental website resource to accommodate user requests?
Method
Overview
The current VHA-delivered intervention allows users to report their dietary intake during an approximately 12-minute conversation, and receive evidence-based, tailored, recommendations for CRC prevention. The study protocol was approved by the university Institutional Review Board (IRB) and is a registered clinical trial (ClinicalTrials.gov, NCT04192071).
Data Collection
A user-centered approach guided our process of including rural adults in the participatory development of the technology. Recruitment occurred via HealthStreet, a university affiliated community engagement and research resource, flyers, and via emailing potentially eligible participants identified via a university affiliated research registry. By collaborating with our users/stakeholders (older rural adults) we aimed to center their information needs. User-centered design approaches follow a typical pattern including identifying needs, specifying the context of use, specifying requirements, producing design solutions, evaluating designs, and determining if the system satisfies the user or if not, starting over again. For this study, after each round of data collection, the VHA was updated based on user feedback. Inkle script programming 39 was used to write and adapt for the virtual human prototype delivered on a virtual interviewer platform. 40
A purposive sample of participants stratified by race and gender, completed the following in either a focus group or think-aloud interview: (1) individually tested an interactive VHA prototype via a web-based platform while researchers were present and available to troubleshoot as needed. Think-aloud participants were prompted to think out load with verbal thoughts and questions as they proceeded through the intervention), (2) completed a self-reported questionnaire on demographics, perceptions, and behaviors, (3) participated in a moderated discussion to provide feedback on the VHA prototype and preferences for graphic stimuli (eg, food images, infographic, visual representations of risk, existing cancer prevention resources). The VHA interaction was not the same for all participants, as after each round of data collection, the VHA was updated with user feedback.
Moderators were trained members of the research team. When possible, we sought to employ gender and racial concordance between participants and moderators. The first two focus groups were conducted in-person in January 2020, while the remaining data collection events occurred remotely via Zoom after a revision to the protocol to allow data collection to continue during Covid-19 related restrictions in place at the time. Questionnaire items included demographic information as well as validated measures to assess risk perceptions, 41 intentions to screen for CRC, 42 message relevancy, 43 and information avoidance among other items relevant to the larger pilot test of the intervention. Focus groups lasted approximately two hours and individual think-aloud interviews lasted about one hour. Sessions were video/audio recorded and transcribed verbatim. Participants received a $35 visa gift card or Amazon e-gift card.
Data Analysis
Researchers iteratively reviewed transcripts and notes taken during data collection and conducted exploratory analysis to determine what changes were needed for each VHA prototype update. Regarding researcher characteristics, members of the research team hold several identities including Black, White, cancer survivor, and have experience working to promote health equity in interdisciplinary teams that include the fields of health communication, computer science, education, and public health. Transcripts were managed with NVIVO software. 44 To facilitate data analysis we employed a general inducive approach to thematic analysis.45,46 The research team created a codebook to formalize analysis of user-generated requests for more information which were coded as information gaps. We extract and describe participants experiences with the intervention in terms of Cognitive Load Theory. We defined information gaps as additional information or content requested by participants (beyond what was presented by the VHA). Information gaps could include specific suggestions for visual cues (eg, images, pop-up features, graphs), topics of interest (eg, recipes, behavior change techniques, cancer facts), or format of information (eg, PDFs, links, websites, videos).
Researchers coded transcripts individually and then discussed findings during weekly data analysis meetings from August 2020 to November 2020. Weekly meetings included discussion of a change log of how the script changed (additions and deletions) during each iteration. There were instances where new content added during a previous iteration, was deleted for the subsequent iteration based on user-feedback. Although those details are outside of the scope of this paper, we plan to report them with results of the quantitative pilot test. Questionnaire data were analyzed using SPSS to summarize participant characteristics with descriptive statistics and the SRQR reporting guidelines were used to ensure rigorous synthesis and reporting of qualitive findings
Results
Participants
Participant Demographics.
Information Gaps
User-generated Categories of Additional Information Needs after VHA Interaction.
Recipes
During the VHA interaction, The VHA presents the user with meal ideas that could be substitutions for dishes with red and processed meat. Participants indicated that they found suggestions useful but also requested specific recipes. Some users also asked about the possibility of receiving personalized meal plans to help them meet the VHA’s recommendations to avoid red and processed meat. Participants prefaced requests for recipes with questions like, “so what can I eat”?
Statistics and Research
Participants also sought clarification of gradients of risk often in the form of research or statistics that could clarify their risk. Participants were also asked if their specific demographic characteristics would change their own risk or if specific populations were driving the trends for increased risk as described by the VHA. Often in response to the VHA discussing recommendations for alcohol, red meat, and processed meats, many participants asked for more data on “how much is okay to eat”, perhaps to negotiate their existing dietary patterns with the recommendations to avoid or limit consumption of nutrition risk factors. Some participants also mentioned wanting to do their research to get more information after their VHA interaction.
Colorectal Cancer Screening Information
Participants requested additional information on CRC screening most frequently during prototypes one and two of the VHA-delivered nutrition module. This was due in part to an early focus on developing the dietary intake reporting features and accuracy of tailored feedback. Due to the extensive focus on nutrition reporting early on, scripted content in the initial prototypes omitted important details about CRC screening. By prototype three (of four) CRC screening content was added into the script. Across versions, participants comments changed from general feedback that there was a lack of information on colorectal cancer to asking more specific questions about where in the body colon cancer starts and how to screen with different modalities (home stool test vs colonoscopy) as well as questions about the accuracy of home stool tests compared to colonoscopy.
Meat Alternatives
Participants wanted more holistic information about food in addition to just the three nutrition risk factors presented by the VHA. Perhaps because the VHA only discussed three food/beverage items to avoid for CRC prevention, participants were curious about other foods, like vegetables, fiber, sugars, and simple carbohydrates, protein, and how these other foods were related to colorectal cancer risk. Table 2. describes in detail the type of user requests.
Behavior Changes Strategies
The VHA script provides users with the recommendation to avoid or limit the three nutritional risk factors discussed. While this was a theoretically informed design, users requested information that would help them engage in action-oriented change. Questions of how to engage in behavior changes were typically asked after the VHA discussed the brief strategies and suggested a list of red/processed meat alternatives.
Delivering Supplemental Information
Website Design Considerations and location of Features in Initial Prototype.
Designing the Website Prototype
The first design consideration involved choosing a medium through which to present the supplemental information requested by participants. Initially, the study team presented an infographic during focus groups and interviews (see Appendix) as an example of a static resource that could be provided to participants either in print or digitally. As data was reviewed, it became clear that a single infographic may not be able to accommodate the breadth of additional information that was being requested. Second, because participants agreed that the brief VHA interaction itself was “just right” in terms of length and information density, any additional information would need to be provided outside of the VHA content. Third, many participants suggested a website while viewing the infographic, citing their view that because different people might want to know about different information, an infographic would be too busy and dense if it were to accommodate the diversity of user needs. Participants also expressed desires for “links” (ie, hyperlinked resources) that elaborated on the main points in the intervention, so they could select only those that aided their learning at that moment. Thus, due to usability, customizability, and organizational capabilities, a website was considered an appropriate supplement to the VHA.
To help the study team operationalize and conceptualize the information design strategies being applied, iterative prototypes starting as a concept map and evolving to web wireframes, resulted in a prototype of the landing page for the website (Figure 1-3). The prototype design process involved using an interdisciplinary and user-centered lens to balance fidelity to the data, the use of existing resources, infrastructure (ie, a university website template) and visual design.
Communicating Key Concepts with Visual Aids
Load reducing methods as defined by Mayer and Moreno 19 and applied during content development.

Website prototype section one.
Aligning Virtual Health Assistants and Website Content
As the viewer scrolls further down, the next section, labeled “More from ALEX”, illustrates the use of the third design consideration: reinforcing “pretraining,” defined as key information participants learn such as terms and definitions, by labeling additional resources in direct alignment with what was just learned. Participants saying, “I hope it’s not the general vague complementary materials that you get,” reinforced the need for this consideration. Some participants discussed the difficulty of using supplementary materials without explicit connections to what they just learned. Thus, the webpage section in Figure 2 displays the five categories of desired additional information, accompanied by direct quotes from the VHA’s discussion of that topic. An image of the VHA accompanies the quote, designed as a multimodal cue to reactivate previously learned information. This approach again employed signaling and brought in the strategy of segmenting which involves breaking the information into “bite-size” and distinct segments. These “learner-controlled segments'' help information transfer.
27
Website prototype section two.
Credible Information
The fourth consideration involved the source of the information. Participants wanted to see credible information, so we link users to curated content via the links in the “More from ALEX” section (Figure 2). While segmenting was the primary strategy applied to this consideration, pretraining influenced the decision to include outside resources and materials like journal articles or evidence-based guides. Meaningful learning of complex topics or systems can be assisted by pretraining on basic definitions and behaviors of the system’s components (eg, what is colon cancer and how is it affected by nutrition). So, while scientific journal articles may not be a participant’s typical reading choice, pretraining from the VHA may support learners in parsing specific, peer-reviewed sources, that represent a curated selection to directly address the most requested information.
Offering Interactivity
Finally, participants requested more personalized experiences. This often was expressed by asking about ways of sharing comments or questions with the VHA. Thus, the “Ask ALEX” Website section was incorporated at the bottom of the prototype to allow the participants a feedback loop with the research team (Figure 3). While a feedback mechanism of this kind may present barriers that still need to be addressed as the prototype progresses (eg, making it clear that the team cannot provide medical advice, being explicit about the level of privacy, deciding if connecting participants to local resources is within the scope of the project), user requests made it clear that individualizing the information processing experience was of interest. Website prototype section three.
Discussion
Despite the growing use of information technologies to support the health goals of diverse audiences, the development of theoretically informed, cancer prevention and control interventions with older rural adults have not been adequately explored. The present study identifies participants’ preferences for the content and design of a VHA-delivered CRC prevention intervention. The main findings suggest that having access to a website after discussing cancer risks with a VHA that gives real-time, person-specific feedback is desirable and may support action planning needs. Participants specified five categories of information gaps after the VHA interaction. Researchers used this feedback to inform the content and design of a website that also considered the potential impact of the participant’s cognitive load. Providing participants direct access to decision support materials after learning about cancer risks is supported by previous research. Zikmund-Fisher et al 47 describe how women being asked to consider breast cancer treatment options who received cancer therapy options sequentially (rather than all at once) had improved comprehension of risks.
Theory-Informed vs User-Informed
Cancer information-seekers may be primed to experience cancer information overload if confronted with content without the appropriate schema to process it. Existing research indicates as mental schemas evolve and learn, they impact cognitive processing and workload of the user. 48 For example, providing new recipes may be helpful to promote reducing processed meat consumption, however, if recipes are presented alongside need-to-know information about CRC risk and screening options, the recipes have the potential to contribute to cognitive overload. Thus, design considerations to manage cognitive load may be particularly important.
Four of the several evidence-based strategies used to prevent cognitive overload are expanded on including pretraining, segmenting, signaling, and weeding. First, the brief VHA interaction serves as a conceptual pretraining for users, who can form a mental map of CRC concepts before getting access to a website with additional content. Second, the website segments or breaks up information into bite-sized pieces, which avoids problems from presenting too many risks at once. 49 Segmenting may be particularly important for the task of information recall (eg, recalling information to plan diet changes and obtain cancer screening) which otherwise could be impeded by the existing cognitive load of learning about personal cancer risk in the same interaction. 50 Third, signaling is most useful when extra information is included in a learning aid, as it helps learners focus on the most important pieces of information. In the current study, signaling was used by placing exact phrases from the VHA interaction into website headings. 51 Finally, weeding prioritizes need-to-know information and was used to eliminate extraneous material from the brief VHA interaction throughout the iterative process.
Despite the use of theoretically informed information architecture, the importance of user-centered implementation strategies beyond the development phase is crucial. In the current study, the VHA presents proximal nutrition risk factors to activate the more psychologically distant risk of potential future cancer based on construal level theory. 52 Conversely, the user-centered approach allowed researchers to supplement the VHAs risk information with additional website content as requested by participants. Moreover, understanding how cancer information overload is experienced by audiences with varied social determinants of health is important. In fact, education, income, and employment status are predictors of cancer information overload; with those making less than $50,000 annually, no college degree, and no employment more likely to experience overload. 36 Preferences of traditionally marginalized populations regarding health are just beginning to enter the literature.
Virtual Health Assistants as Information Curators
As a practical application, VHAs are well suited to act as credible gatekeepers and bridges to curated cancer information in various ways. First, A common predictor of engaging with CRC screening is a recommendation from a doctor or a close family/friend. 53 If VHAs are seen as credible, familiar sources, they may be effective at facilitating the uptake of promoted cancer prevention behaviors. Second, VHAs may also be an effective gatekeeper for cancer information seekers an important affordance, given the high prevalence of harmful cancer information and misinformation on social media. 54 VHAs role in filtering information may also avoid message fatigue (eg, feeling exhausted when exposed to too many undesired similar messages) and the related negative outcomes like reactance, opposition, or disengagement. 36 Thus, Directing information seekers to a curated site may help users who want additional resources avoid harmful cancer information and message fatigue.
Study Limitations
The current study findings should be considered in the context of intervention design and development, rather than generalized to assume causal links with intentions or behavior. The impact of website features, content, and implementation must still be tested for feasibility and efficacy. Finally, participants are given an option to access additional content after the VHA interaction, however, the current design does not assess engaging with a website prior to or simultaneously with a VHA, as such content will continue to be adapted as we learn more about how adults interact developed cancer prevention materials.
Future Directions
The developed intervention will be pilot tested using a national Qualtrics survey panel of adults living in rural areas of the United States. Future directions may also include developing models to curate the user experience of navigating websites. For example, user data provided during interactions with a VHA (eg, content preferences, eating, drinking, or smoking habits) could be used by a system to enable or disable certain sections of the subsequent website (eg, a recap of general screening guidelines, options to order home stool kits, resources for how to talk a doctor about screening). While the current study does not explicitly test for mechanisms of motivation or change, we lay the groundwork for exploring theoretically informed navigation between related cancer prevention resources among a traditionally understudied population. Future studies of mechanistic pathways associated with using VHAs as cancer prevention information curators are needed. Finally, measuring website user information overload with validated scales will be useful for the next steps and user-testing. 55
Conclusion
The role of curating web-based navigation between evidence-based cancer prevention and control resources warrants more research, especially among older rural adults. The continual incorporation of user feedback allowed the option to add a supplemental website, consistent with strategies “to apply rapid bidirectional approaches to fail fast and learn quickly” that facilitate timely and equitable development of resources. 53 Although information needs of older rural adults can be strategically accommodated in health information technologies- meeting these needs may be enhanced if design considerations are informed by cognitive load theories and user-centered design principles.
Footnotes
Acknowledgments
The authors would like to thank the stakeholders and community advisory board members who provided feedback.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by National Cancer Institute, National Institutes of Health, Award #3R01CA207689-03S2. Dr. Cooks was supported by a grant from the National Cancer Institute (T32CA257923). The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.
Ethical Approval
All procedures were approved by the University of Florida institutional review board (IRB#201902537) and Scientific Review and Monitoring Committee (SRMC) OCR27722. Informed consent was obtained from all participants.
Infographic Prototype Presented in Focus Groups and Interviews
