**Background:** Breast cancer is one of the most frequently diagnosed cancers in women worldwide, with approximately 355,460 new cases in Europe in 2020 and 34,088 in Spain. Survival rates have reached around 85%, but diagnosis and treatment continue to significantly impact patients' physical, emotional, cognitive, and social quality of life. Person-centred care (PCC) emphasizes quality communication and shared decision making (SDM) between patients and healthcare professionals. Digital health literacy (DHL)—the ability to find, understand, evaluate, and use health information from digital sources—is critical for informed decision making, yet many patients lack these skills. Massive Open Online Courses (MOOCs) offer flexible, accessible educational resources that can address these gaps. This study aimed to co-create a MOOC on PCC and DHL for and with women with breast cancer.
**Methods:** A modified experience-based co-design approach was used, divided into three sequential phases: exploratory, development, and evaluation. Adult women (≥18 years) at any cancer stage, survivors, families/carers, and healthcare professionals were recruited via snowball sampling in the Canary Islands, Spain, between May and June 2020. The co-creation process involved three online sessions (120 minutes each) via Zoom between June 2020 and March 2021, supported by a Moodle platform. In the exploratory phase (June 2020), participants created a patient journey map (PJM) documenting experiences, emotions, and information needs across diagnosis, treatment, and long-term follow-up stages. In the development phase (July 2020), participants reviewed the PJM and designed MOOC structure and content. Between July and December 2020, weekly activities on Moodle allowed iterative feedback on content proposals. A third session (March 2021) evaluated the co-creation experience and MOOC acceptability. Experience was assessed with a 13-item questionnaire (6 Likert-scale items, 4 quality items, 3 open-ended questions). MOOC acceptability was evaluated with an 18-item scale based on the Technology Acceptance Model (15 Likert-scale items, 3 open-ended questions).
**Key Results:** Twenty-eight participants were contacted; 19 participated (17 patients and 2 nurses). Patient mean age was 47.88 years (SD 6.23); 47.07% had a university degree; 64.71% were diagnosed ≥5 years ago; 52.94% were currently undergoing treatment; 76.47% had no prior knowledge of PCC. The co-designed PJM revealed key emotions across stages: shock, anxiety, and uncertainty at diagnosis; continued uncertainty plus concern about appearance during treatment; and feelings of helplessness or loneliness during long-term follow-up. Participants reported limited information on self-care and desired more involvement in decision making, particularly in oncology units compared to gynaecology units. The final MOOC comprised five units: (i) breast cancer (definition, types, stages, treatments, myths); (ii) PCC (definition, implementation, consultation tips); (iii) DHL (definition, skill-building guidelines); (iv) self-care (physical side effects, emotional management); and (v) patient experiences and advice across healthcare, family, social, and work domains. For the co-creation experience questionnaire (n=17, 89.47% response rate), 94.12% strongly agreed that patient participation was useful (mean 4.94/5, SD 0.24); 82.35% were satisfied with communication (mean 4.76, SD 0.56); 88.24% rated activity quality as very good or excellent; and 82.35% rated researcher involvement as excellent (mean 4.82, SD 0.39). For MOOC acceptability (n=7, 36.84% response rate), 85.71% totally agreed that content was consistent with objectives (mean 4.86, SD 0.38); 85.71% would recommend the MOOC (mean 4.86, SD 0.38); 71.43% found language easy to understand (mean 4.43, SD 0.98); and 85.71% found time commitment appropriate.
**Clinical Implications:** The co-creation methodology produced a MOOC that participants found relevant, clear, and useful. The patient journey map approach identified key moments for targeted information delivery across the care trajectory. The intervention addresses unmet needs for DHL and SDM support in breast cancer care, potentially reaching patients who cannot attend face-to-face training. However, the study had limitations: the COVID-19 pandemic forced online rather than face-to-face sessions; only two nurses participated (no physicians); participants were predominantly highly educated; and acceptability data were available for only 36.84% of participants. The authors note that future work should evaluate the MOOC's effectiveness at improving actual (not just self-perceived) DHL, objective disease knowledge, and involvement in treatment decisions using an independent sample.