Background: Little research has focused on implementation of electronic Patient Reported Outcomes (e-PROs) for meaningful use in patient management in 'real-world' oncology practices. Our quality improvement collaborative used multi-faceted implementation strategies including audit and feedback, disease-site champions and practice coaching, core training of clinicians in a person-centered clinical method for use of e-PROs in shared treatment planning and patient activation, ongoing educational outreach and shared collaborative learnings to facilitate integration of e-PROs data in multi-sites in Ontario and Quebec, Canada for personalized management of generic and targeted symptoms of pain, fatigue, and emotional distress (depression, anxiety). Patients and methods: We used a mixed-methods (qualitative and quantitative data) program evaluation design to assess process/implementation outcomes including e-PROs completion rates, acceptability/use from the perspective of patients/clinicians, and patient experience (surveys, qualitative focus groups). We secondarily explored impact on symptom severity, patient activation and healthcare utilization (Ontario sites only) comparing a pre/post population cohort not exposed/exposed to our implementation intervention using Mann Whitney U tests. We hypothesized that the iPEHOC intervention would result in a reduction in symptom severity, healthcare utilization, and higher patient activation. We also identified key implementation strategies that sites perceived as most valuable to uptake and any barriers.

Background Patients with cancer require adequate preparation in self-management of treatment toxicities to reduce morbidity that can be achieved through well-designed digital technologies that are developed in co-design with patients and end users. Objective We undertook a user-centered co-design process in partnership with patients and other knowledge end users to develop and iteratively test an evidence-based and theoretically informed web-based cancer self-management program (I-Can Manage). 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 self-management education and support (SMES) program to enable patient self-management of treatment toxicities (phase 1); (2) develop the SMES prototype based on human-centered, health literate design principles and co-design processes; and (3) evaluate usability of the I-Can Manage prototype through user-centered testing (phase 2). Methods We developed the I-Can Manage program using multiperspective data sources and based on humanistic and co-design principles with end users engaged through 5 phases of development. We recruited adult patients with lung, colorectal, and lymphoma cancer receiving systemic treatments from ambulatory clinics in 2 regional cancer programs for the qualitative inquiry phase. The design of the program was informed by data from qualitative interviews and focus groups, persona and journey mapping, theoretical underpinnings of social cognitive learning theory, and formalized usability testing using a cognitive think-aloud process and user satisfaction survey. A co-design team comprising key stakeholders (human design experts, patients/caregiver, clinicians, knowledge end users, and e-learning and digital design experts) was involved in the developmental process. We used a cognitive think-aloud process to test usability and participants completed the Post-Study System Usability Questionnaire (PSSUQ). Results In the initial qualitative inquiry phase, 16 patients participated in interviews and 19 clinicians participated in interviews or focus groups and 12 key stakeholders participated in a persona journey mapping workshop to inform development of the program prototype. The I-Can Manage program integrates evidence-based information and strategies for the self-management of treatment toxicities and health-promoting behaviors in 6 e-learning modules (lay termed “chapters”), starting with an orientation to self-management. Behavioral exercises, patient written and video stories, downloadable learning resources, and online completion of goals and action plans were integrated across chapters. Patient participants (n=5) with different cancers, gender, and age worked through the program in the human factors laboratory using a cognitive think-aloud process and all key stakeholders reviewed each chapter of the program and approved revisions. Results of the PSSUQ (mean total score: 3.75) completed following the cognitive think-aloud process (n=5) suggest patient satisfaction with the usability of I-Can Manage. Conclusions The I-Can Manage program has the potential for activating patients in self-management of cancer and treatment toxicities but requires testing in a larger randomized controlled trial.

BACKGROUND Cancer and its treatment are a major cause of morbidity and health care costs worldwide. While systemic therapies are highly effective, they are associated with toxicities that can be life-threatening and disabling if not managed effectively. Digital technologies hold promise for enabling patient self-management of treatment-related toxicities, but few programs have been developed using a co-design approach to ensure relevance and uptake. OBJECTIVE We undertook a user-centred co-design process in partnership with patients and other knowledge end-users to develop and iteratively test an evidence-based and theoretically informed web-based cancer self-management education program prototype (I-Can Manage). METHODS We developed the I-Can Manage web-based prototype based on human-centered and co-design methodologies. The content, features, and functions were informed by an initial qualitative inquiry discovery phase with patients diagnosed with lung, colorectal, and breast cancer followed by a persona and journey mapping workshop to further define content and desired features, and formalized usability (UI/UX) testing in a human factors digital We developed the I-Can Manage web-based prototype based on human-centered and co-design methodologies. The content, features, and functions were informed by an initial qualitative inquiry discovery phase with patients diagnosed with lung, colorectal, and breast cancer followed by a persona and journey mapping workshop to further define content and desired features, and formalized usability (UI/UX) testing in a human factors digital design lab. Five phases of co-design were followed to develop the components and features/functions of the web-based program. Patient partners and knowledge end-users were engaged in the co-design of the program to ensure relevance of components, features and functionalities, and to promote its uptake. design lab. Five phases of co-design were followed to develop the components and features/functions of the web-based program. Patient partners and knowledge end-users were engaged in the co-design of the program to ensure relevance of components, features and functionalities, and to promote its uptake. RESULTS In the qualitative discovery phase, participants described the “hard work” of managing cancer and their desire for an online program as a “a reliable source of trustworthy information” that would “normalize” their experience; and enable them to manage treatment side-effects and emotional consequences. In response to these issues, the theoretical underpinnings of social cognitive theory, self-efficacy, and self-management skills informed the components and features of I-Can Manage as an interactive online program. The program integrates information and evidence-based strategies for self-management of treatment toxicities and health-promoting behaviors in six e-learning modules (lay term-chapters), starting with an orientation to self-management and the central role of patients in managing cancer and treatment effects. Behavioral exercises, patient written and video stories, downloadable learning resources, and online completion of brief SMART (specific, measurable, achievable, relevant, time bound) goals and action plans were integrated across chapters to promote implementation of strategies specific to managing treatment effects and health behaviours to promote health recovery. Online functionalities were refined (e.g., number of clicks to access information) based on user experience testing (n=5) and scores on the Post-Study System Usability Questionnaire (PSSUQ) in a diverse cancer patient population. PSSUQ (mean total score: 3.75) suggests patient satisfaction with the usability of I-Can Manage program. CONCLUSIONS The I-Can Manage program, developed through co-design with patients, targets activation of patients in the use of core self-management skills, problem-specific self-management strategies, and health behaviours to manage cancer symptoms, treatment toxicities, emotional distress, and quality of life.