Patient Engagement in Real-World Data Collection: User Characteristics of a Health App for People Living With Pancreatic Cancer

OBJECTIVES: Real-world data and patient engagement have greater prominence in healthcare decision-making than ever. Developed by The Brain Tumour Charity, Medli is a health app that supports patients with their condition and enable them to record and share health data with healthcare professionals, patient groups/charities and academics/industry. In April 2023, Pancreatic Cancer UK (PCUK) launched their tailored version of Medli for people living with pancreatic cancer. Pancreatic cancer incidence was 18 cases/100,000 UK population (2016–2018). We aimed to assess the characteristics and engagement patterns of early users of Medli.

METHODS: Recruitment and usage data for Medli by PCUK from launch to 18-Jun-2023 were analysed. We report summary statistics of user characteristics and engagement of patient or family/friend/carer users with different app features.

RESULTS: Since launch, 112 patients and 83 family/friends/carers signed up to Medli. Of 130 UK-based users recording pancreatic cancer as their condition, most were ≥65 years old (patients: 57%; family/friends/carers: 64%) with 11% patients and 33% family/friends/carers aged ≥75 years. 45% of users reported pancreatic ductal adenocarcinoma and 6% reported pancreatic neuroendocrine cancer. Most patients had advanced metastatic cancer (38%), followed by localised (15%) and locally advanced cancer (12%). Most popular app features were the quality-of-life tracker (46/130 users; 93 uses), appointment log (39/130 users; 156 uses), symptom tracker (37/130 users; 210 uses, recording 999 individual symptoms logs) and medication record (21/130 users; 104 uses).

CONCLUSIONS: Older people (≥65 years-old) and those reporting advanced, untreatable disease comprised the main user base for Medli. Few patient users were aged ≥75 years despite ~50% of new cases occurring in this population, which may reflect older patients’ unfamiliarity with technology and suggest an important role for family/friends/carers. However, as these results are based on early usage data, user characteristic trends and engagement patterns may change as more users sign up to Medli in the future.