Informing the development of an online resource for patients with oral cancer: triangulation of qualitative data from patients and healthcare professionals

Background: The traditional, paternalistic, paradigm of healthcare delivery is no longer acceptable; with transformation placing greater emphasis on shared-care and decision-making, centred on patients’ values, needs and preferences. In this process, patients with cancer often assume a more active role in healthcare. The internet has acted as a likely catalyst and, or facilitator in this process, with proliferation during the global pandemic. Consequently, there has been an expansion of health information being accessed online by patients. A recent scoping review indicated a lack of high-quality evidence-based online resources for head and neck patients, with a paucity of end-user involvement during development. To inform the development and co-design of a high-quality, acceptable online resource for oral cancer patients, aimed at facilitating shared decision-making and treatment preparedness, patients’ and healthcare professionals’ (HCPs) preferences have been elucidated in this study.

Methods: Qualitative research design using semi-structured interviews was employed with patients (n=10) and three focus groups with HCPs (n=21) to understand their perceptions and preference on content, issues to be addressed and key design elements of an online resource to promote decision-making and coping with oral cancer and its treatment effects. Reflexive thematic analysis (TA) was used to analyse both data sets, which were then triangulated.

Results: Three key themes were identified from triangulated TA: (I) key objectives and constructs to underpin the online resource; (II) important content to incorporate within the online resource; and (III) design preferences for the online resource. Participants indicated a preference for online content to be mapped across the key landmarks of the cancer trajectory (at diagnosis, during and after treatment); with tailoring and layering of information; presented through a biopsychosocial lens and incorporating patient experience narratives, to aid contextualising of information.

Conclusions: This research highlights the need to co-produce online resources with key expert stakeholders, integrating factual information alongside patients experience narratives. Incorporating patients’ narrative would appear to be a beneficial source of information to contextualise patient experience, whilst empowering and educating patients to become more proactive in decision-making, self-management and improving health outcomes.