Background:
The rising number of cancer survivors and the shortage of health care professionals challenge the accessibility of cancer care. Health technologies are necessary for sustaining optimal patient journeys. To understand individuals’ daily lives during their patient journey, qualitative studies are crucial. However, not all patients wish to share their stories with researchers.

Objective:
This study aims to identify and assess patient experiences on a large scale using a novel machine learning–supported approach, leveraging data from patient forums.

Methods:
Forum posts of patients with colorectal cancer (CRC) from the Cancer Survivors Network USA were used as the data source. Topic modeling, as a part of machine learning, was used to recognize the topic patterns in the posts. Researchers read the most relevant 50 posts on each topic, dividing them into “home” or “hospital” contexts. A patient community journey map, derived from patients stories, was developed to visually illustrate our findings. CRC medical doctors and a quality-of-life expert evaluated the identified topics of patient experience and the map.

Results:
Based on 212,107 posts, 37 topics and 10 upper clusters were produced. Dominant clusters included “Daily activities while living with CRC” (38,782, 18.3%) and “Understanding treatment including alternatives and adjuvant therapy” (31,577, 14.9%). Topics related to the home context had more emotional content compared with the hospital context. The patient community journey map was constructed based on these findings.

Conclusions:
Our study highlighted the diverse concerns and experiences of patients with CRC. The more emotional content in home context discussions underscores the personal impact of CRC beyond clinical settings. Based on our study, we found that a machine learning-supported approach is a promising solution to analyze patients’ experiences. The innovative application of patient community journey mapping provides a unique perspective into the challenges in patients’ daily lives, which is essential for delivering appropriate support at the right moment.@en

Purpose: Participatory design (PD) is a collective creative design process involving designers and nondesigners. There is limited reporting on the experience of using PD for adolescent and young adult (AYA) care. This study summarizes lessons from employing PD to develop care for AYAs with cancer. Methods: A qualitative multiple-case study method was conducted of three PD processes addressing food (FfC), intimacy and sexuality (I&S), and integrative medicine (IM) in caring for AYAs with cancer. Results: Local key stakeholders, who were exposed to a problem and had not been successful at solving it individually, were recruited to ‘‘dream’’ together. Through this synergy, a shared understanding of the problem and a joint mission emerged to find a solution. PD tools were used to develop a problem definition. An open mind and explorative research helped to understand the problems, and stakeholders were managed such that idea-sharing and learning were enabled. Designers translated ideas into prototypes. The PD process was prolonged due to the hierarchical hospital environment, business considerations, and additionally required evidence. The FfC program produced an effective new food service for the whole hospital. The I&S initiative developed a podcast, two articles, and a prototype website. The IM project developed a pilot study. Conclusions: For a PD process to successfully develop care for AYAs, one needs to use designers and skilled people, PD tools, and an open-ended approach to visualize and materialize new forms of care. Furthermore, recruitment and facilitation techniques help leverage knowledge and create a synergy in a democratic environment between stakeholders.

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