The burden of cancer and its treatment is a major cause of morbidity and growing health care costs worldwide [1,2]. Systemic therapies remain highly effective treatments for cancer [3] but are associated with a myriad of treatment-related toxicities, including fatigue, myalgia, gastrointestinal disturbances (nausea, vomiting, diarrhea), that can range from mild and temporary to severe, chronic, and debilitating [4-6]. Treatment toxicities (also called treatment side effects) are highly distressing [7], can lead to poor treatment adherence [8], and high rates of costly emergency department visits [9-11]. Ultimately, it is patients and their caregivers that shoulder responsibility for self-management (SM) of treatment toxicities and the effects of cancer at home between clinic visits with minimal support from health care providers. Access to high-quality education tools and resources that enable patients to effectively manage complex treatment-related toxicities in routine care are lacking [12,13], leaving patients vulnerable to potentially life-threatening severe adverse events, poorer functioning in daily life, long-term disability, and possibly worse survival [14,15].

Similar to the posttreatment survivorship phase [16], the acute treatment phase of cancer should be considered a “teachable moment” in which self-management education and support (SMES) are leveraged to optimize patients’ well-being and strengthen their use of core SM skills (ie, goal setting/action plans, problem solving, decision-making, communication with providers, self-monitoring) [17] and behaviors specific to treatment side effect management. SM is defined as involving the day-to-day tasks, problem-specific strategies, and behaviors individuals must undertake for self-monitoring and management of their disease and symptoms [18]. People living with cancer often feel anxious, overwhelmed, and confused by the sheer volume of information and medical jargon they must digest [19] and need educational materials, including verbal instructions augmented by written documentation, and multimedia learning tools to support their learning and retention [20,21]. In this context, SMES that enables patients to gain self-efficacy in the use of core SM skills (ie, goal setting/action plans, problem solving, decision-making, communication with providers, self-monitoring) [22,23] and behaviors specific to toxicity management and to optimize health [24] are essential early in the diagnosis and treatment phase of cancer and across the cancer trajectory.

Digital technologies are fast emerging for the delivery of SMES for chronic illness outside the walls of hospitals and clinics [25] and are a necessity in the context of constrained health care resources [26]. Digital delivery of SMES is also timely in the context of the COVID-19 pandemic, which has helped put in place the infrastructure necessary to support virtual care [27]. Systematic reviews of digital self-management interventions (DSMIs) in cancer populations show benefits for reducing symptom severity and improving quality of life [28,29]. However, heterogeneity in SMES interventions [30] and what should be translated into DSMIs support components and functionalities has led to some uncertainty about effectiveness [31]. Moreover, many DSMIs are developed without a guiding theoretical framework [32,33], focus on passive dissemination of information [34], and seldom include functionalities that promote patient activation or application of SM behaviors and uptake of health behaviors. Many have not been developed using a co-design approach or best practices in usability testing and seldom target the active treatment phase of cancer [35]. DSMIs seldom focus on active involvement of patients in the early SM of cancer and treatment toxicities [36] or develop programs that address eHealth literacy, which plays a significant role in the uptake of health interventions [37].

Our work addresses these gaps in digital SM programs through the development of the I-Can Manage program, an evidence-based and theoretically informed online SMES program that targets the acute diagnostic and systemic treatment phase of cancer. The overall aim of this study was to ensure usability, uptake, and potential effectiveness of the I-Can Manage program through engagement of patient partners and knowledge end users in its co-design. The specific study aims addressed in 2 phases were to (1) identify from the perspective of patients with cancer and clinicians the desired content, features, and functionalities for an online SMES program to enable patient SM of treatment toxicities (phase 1); (2) develop the SMES prototype based on human-centered [38], health literate design principles [37] and co-design processes [39]; and (3) evaluate initial usability of the I-Can Manage prototype through user-centered testing (phase 2). In this paper, we describe the development of the I-Can Manage prototype, co-design approach, and results of usability testing.

The overall study design was descriptive, sequential mixed methods (qualitative interviews and usability survey) [40]. Study participants (patients and clinicians) were recruited from ambulatory cancer clinics at a large comprehensive cancer, Princess Margaret Cancer Centre (Toronto, ON), and a regional cancer program (Juravinski Cancer Centre, Hamilton, ON). The methods and qualitative data insights (results) are presented together reflecting the iterative nature of the co-design process and the multiple perspectives that informed development of the I-Can Manage program. The overall co-design approach and the multisources of data that informed the prototype development are shown in Figure 1. The specific methods and results are further elaborated for each phase of the development and design below.

The study was approved by the Research Ethics Board of the University Health Network (Toronto, ON; 17-5533.7) and the Juravinski Cancer Center (Hamilton, ON; 3624). Written informed consent was provided by all participants (patients, clinicians) recruited for the qualitative interviews, focus groups, and usability testing phase of the prototype development. Demographic information was collected from participants including age, type of cancer, gender, date since last treatment, type of treatment received, and comfort with use of digital technology. All data were deidentified including the data obtained in a persona mapping workshop that included members of the design team. Patient participants in the design team meetings and usability testing phase of the study received reimbursement for travel expenses and parking costs. We adhered to local, national, regional, and international law and regulations regarding protection of personal information, privacy, and human rights as required for digital technology. Ethics approval number for this study is 17-5533.7.

As shown in Figure 2, we followed a 5-phase human-centered and co-design thinking process [41,42] to develop the I-Can Manage program with engagement of patients as end user partners and other knowledge end users (eg, clinicians, administrators, cancer support service leaders) throughout all stages of the research process from inception of the research question to prototype completion. Persons with lived experience of cancer or their caregivers interested in participating in the research were recruited from a provincial cancer agency through an email blast sent from the program administrator to their list of volunteers as patient partners. The email blast described the proposed research and invited them to engage as partners in the co-design of the digital SM learning platform, I-Can Manage. Interested patients or caregivers were then contacted by telephone to further discuss the proposed research and confirm their interest in participating and the need for the proposed program.

Our design team comprised 6 patients (3 females with breast cancer [1 Aboriginal], 2 males with lymphoma, and 1 male with lung cancer), 1 caregiver, 3 digital designers, 2 clinicians (nurses), 1 PhD student experienced in adolescents and young adults populations, and knowledge end users (medical oncologist, national cancer services director, cancer information specialist, eHealth literacy expert, and experts in patient education) with diverse cancer experiences who were engaged to provide input throughout the program development and design phases.

We developed the content, features, and functions of a web-based SM program, I-Can Manage, iteratively in co-design with patient partners and knowledge end users (eg, cancer peer support program leaders, clinicians) using multiperspective data sources and a 5-phase human-centered development process that included formalized usability testing. The I-Can Manage program was positively viewed by our end users. Satisfaction with the system was high, and it was viewed as an easily navigable SMES program that could be integrated early in the acute diagnosis and acute treatment phase of cancer. Our work addresses a gap in knowledge about the application of an iterative co-design and demonstrates a user-centered digital design process that could be used by other researchers in the development of similar programs.

Digital technology to deliver SMES is increasingly recognized as important for reaching people living with cancer on a wider scale in their own homes and communities and is complementary to guidance by health care professionals and can enhance health system capacity [59,60]. Little research has focused on the potential effectiveness of digitally delivered SMES to enable activation of patients in the SM of treatment-related toxicities, and the psychosocial and lifestyle changes that accompany a cancer diagnosis. A recent review identified 19 studies evaluating DSMIs in cancer populations, with 11 studies focused on the active phase of cancer treatment (population range 34-752 patients) [31]. Most digital programs identified were focused on dissemination of information, patient education, self-care advice, or collection of patient-reported outcomes, symptom data for the purpose of communicating or alerting health care providers versus features and functions to support the application of SM strategies and behaviors. Moreover, there is enormous diversity in intervention content in digital SMES programs and the emphasis placed on uptake of behaviors. Further, many were not developed in co-design with end users or using best practices in usability testing. Thus, not surprisingly, the findings for effectiveness of DSMIs have been mixed, with some studies showing positive effects on quality of life and anxiety and depression, whereas other studies showed no effect. Other systematic reviews showed positive benefits of DSMIs in improving adherence to oral treatment regimens [61], symptom distress [62], and healthy lifestyle behaviors [63]. However, considerable heterogeneity in intervention components tested and outcomes measured are noted for cancer SM interventions in general [32] and for digital programs [59]. Few of these programs include features and functionalities that enable the activation of SM behaviors, core SM skills, and building self-efficacy as key mechanisms for achieving a change in behaviors and improvement in health outcomes [60]. Most focus on dissemination of information or education that may improve knowledge but is inadequate to promote uptake of health behaviors particularly for patients with complex and dynamic illnesses such as cancer. By contrast, I-Can Manage specifically focuses on the behavioral aspects of SM reinforced through the way that information is provided (ie, action oriented) and completion of behavioral exercises by users (eg, steps to follow to develop a graded activity plan, healthy meal plates, breaking vicious cycles of fatigue and negative emotions, coping strategies, goal setting and action planning for each module, and building of self-efficacy).

Patient engagement in SM is a desired standard of quality cancer care [64] that has not yet been integrated in routine practice [65] and patients describe poor access to SM in ambulatory care [66]. The I-Can Manage program has universal applicability for systemic (chemotherapy and immunotherapy) or oral cancer treatments as it is agnostic to cancer type. It is intended to capitalize on the diagnosis and treatment phase of cancer as a “teachable moment” to support patients in managing the multiple tasks of cancer and treatment early in the continuum. SM is particularly challenging during the acute phase of cancer because people are learning a new medical language and how to manage toxicities for often complex treatment regimens alongside dealing with the emotional sequalae of cancer, and seldom realize they can take actions to optimize health.

We envision future chapters and functionalities that support tailoring to cancer type, treatment modalities, phases of cancer care (ie, posttreatment survivorship), and differing needs of younger and older patient populations, as well as cultural, ethnic, and race diversity. For example, social media and peer support are considered essential to young adults with cancer [67], and future iterations will need to optimize Moodle functionalities or a native app-based format to offer these components. The I-Can Manage program provided direct links to other reputable organizations whose mandate was peer support. It is also recognized that older individuals may require tailored SM support programs that address multimorbidity [68] and changes in cognitive capacity that occur with aging and can impact on learning [69].

Chronic diseases such as cancer place a significant burden on health care systems globally and are a major source of health care expenditure. Disease SM programs are advocated as a solution to this problem; however, little progress has been made in the redesign of health care systems to ensure integration of these programs in routine cancer care [12]. Digital technology to support patient activation in disease and health SM leveraging programs such as the I-Can Manage program may be more widely scalable than trying to redesign complex care systems, which have largely failed to date [70].

Digital SMES should be considered an essential component of routine clinical care that is financed and integrated in a comprehensive program of SM support [71,72], particularly in the context of episodic ambulatory cancer care that is characterized by high-volume patient loads and short rapid visits without scheduled follow-up for SM training or support. Thus, implementation of SMS in cancer care settings has been challenging and progress lags compared with other chronic diseases. Future research should also identify the essential components of digital SM support solutions that translate into behavior change and clinicians will need to gain comfort in prescribing digital therapeutics as part of their treatment approach; besides, implementation research will be crucial to promote uptake in practice.

Future research should focus on formal testing of the I-Can Manage program on SM behaviors and health outcomes and adaptations for tailoring to different treatment modalities, cancer types, socioeconomic and cultural diversity, and older and younger age groups. We expect that the I-Can Manage program would result in improved self-efficacy, uptake of SM strategies, and better quality of life and wellness that requires testing in a clinical trial.

There are some limitations in our work to consider such as the inclusion of patients and clinicians from only 2 cancer centers in the qualitative inquiry. Although our patient partners were from rural/remote and urban regions, most had high levels of education and income that could have introduced some selection bias in the study. Additionally, convenience sampling was used for recruiting patients for usability testing, the sample size was small, and only patients were included and not caregivers. This could have introduced some selection bias given that those interested in digital solutions or more computer literate may have been more willing to participate. Our usability testing focused on tasks for completion that only included the Introduction, and Chapters 1 and 2 and not all chapters given the time that would be required to complete them in a single session.

Suboptimal management of cancer treatment toxicities can lead to serious complications and negative effects on quality of life and worse survival. Patients/families require education and SM support to apply the SM strategies and behaviors necessary to effectively manage the medical, emotional, and lifestyle changes that are necessary to adapt to cancer and treatment. Digital SMES is a promising solution that requires future testing for its effectiveness on improving health outcomes.