Technology for fast-tracking high-risk head and neck cancer referrals: Co-designing with patients

Abstract

Background: Head and Neck Cancer (HNC) is the eighth most prevalent global cancer. Timely recognition of symptoms is crucial for reducing mortality rates. The EVolution of a patiEnt-REported symptom-based risk stratification sySTem to redesign the suspected Head and Neck cancer referral pathway (EVEREST-HN) study aims to develop and evaluate a risk stratification tool using patient reported symptoms, which will be populated remotely in the community before the patient is seen by the clinician to hasten HNC diagnosis. EVEREST-HN will design a patient SYmptom iNput Clinical (SYNC) system to gather patient symptom data and calculate a risk score to aid clinicians in identifying high-risk cases. This identification potentially allows for high-risk patients to be seen sooner, thereby improving patient outcomes. Methods: Three workshop sessions were conducted involving a total of 17 unique participants, with several contributing to multiple sessions: nine in the co-design session, six in the validation session, and nine in the evaluation session. The co-design session employed online collaboration with patients’ representatives. Thematic analysis was used to identify requirements and concerns informing the development of a low-fidelity prototype. The validation session assessed whether the prototype aligned with patient expectations. In the evaluation session, participants interacted with an online prototype and provided further feedback. Results: During the co-design workshop, participants emphasized the need for a concise and clear SYNC system questionnaire for reporting suspected HNC symptoms. Concerns were raised about questionnaire length, language clarity, and the inclusion of probing questions. Participants suggested concise questions using lay language, incorporating visual aids for topics like alcohol and tobacco use, and making the sexual activity question optional. Recommendations included diverse language options, hard copies for non-English speakers, and phone call options for those uncomfortable with screen-based technology. The validation workshop confirmed that the prototype reflected participants’ ideas. Feedback highlighted the need for call-back features to help those not confident with technology and the need to present symptom questions first before social background questions. Feedback from the evaluation demonstrated a commitment to efficiency, and continuous improvement. Conclusion: This study aims to develop the SYNC system to enhance efficiency of suspected HNC referrals. The workshops highlighted the importance of end-user inclusiveness in the system development life cycle, with collaboration with stakeholders and repeated feedback, providing crucial insights for ensuring the SYNC system effectively addresses the needs and concerns of patients in the context of HNC diagnosis.