Patients’ lived experiences and recommendations for enhanced awareness and use of integrative oncology services in cancer care

Background: Consuming educational content, adhering to treatment plans and managing symptoms and side-effects can be overwhelming to new oncology patients. Objective: The purpose of this study is to engage patients in conceptualization of enhanced clinic processes and digital health tools to support awareness and use of integrative oncology services. Patient Involvement: We engaged patients in participatory design to understand lived experiences surrounding use of integrative oncology services during and after conventional cancer treatment. Methods: Ten participatory design sessions were held with individual participants. Sessions began with patient story telling regarding diagnosis and paths to awareness and use of integrative oncology services. We then reviewed prototype mobile app screens to solicit feedback regarding digital health functionality to support patient navigation of symptom-alleviating options. Results: Oncology patients are active participants in the management of symptoms and side effects. Patients who utilize yoga, acupuncture, and massage report a need for earlier patient education about these services. Patients express interest in digital health tools to match symptoms to options for relief, provide access to searchable information, and facilitate streamlined access to in-person and remote services. Discussion: Patients co-produce wellbeing by seeking solutions to daily challenges and consuming educational content. Clinics can collaborate with patients to identify high priority needs and challenges. Practical Value: Active collaboration with patients is needed to identify unmet needs and guide development of clinic processes and digital health tools to enhance awareness and use of IO services in conventional cancer care. Funding: The principal investigator was supported by the U.S. Agency for Healthcare Research and Quality (AHRQ K12HS026370). The content of this article is solely the responsibility of the authors and does not necessarily represent the official views of AHRQ. The sponsor had no role in the study design, data collection, analysis, report writing, or decision to submit for publication.