The Role of UK Oncogene-Focussed Patient Groups in Supporting and Educating Patients with Oncogene-Driven NSCLC: Results from a Patient-Devised Survey

To meet the needs of patients with non-small cell lung cancer (NSCLC) with an oncogene-driver, patients have organised into support groups. These groups are building partnerships to provide support and education and to help patients access treatment through sharing information and promoting advocacy. Here, we report findings from a fully anonymised survey conducted in 2020 across the membership of three Facebook-based patient groups in the UK (EGFR Positive UK, ALK Positive UK and ROS-1 Support Group, n = 465). Of 167 respondents, most were women (73.1%), never-smokers (60.5%) and diagnosed with stage IV disease (86.3%). Benefits included feeling better prepared (79.6%), being inspired by other members’ experiences (71.3%) and being helped with feelings of isolation (49.0%); notably only 27.5% struggled when members died or with feelings of increased anxiety (3%). These findings from a representative population of oncogene-driven NSCLC patients provide new information on the experience of living with lung cancer and highlight the value of specialised support. These patient support groups represent powerful resources to enable enhanced public and patient engagement and meaningful alliances with key stakeholders to help deliver improvement in outcomes for patients.