Melanoma UK digital registry
The Melanoma UK app is the first MyRealWorld™ digital platform Vitaccess launched (2017). Its features are updated regularly to enhance user experience.
Vitaccess works with patient advocacy group Melanoma UK and The Royal Marsden NHS Foundation Trust to develop this digital platform that collects data from people living with melanoma. Data are collected in the real-world setting using “bring your own device” (BYOD) technology – participants use their own smartphone to complete questionnaires or surveys at their own convenience. Data are immediately submitted to a central data platform. Users of the platform can see and analyse the anonymized aggregated data in real time.
What data are being collected?
The platform collects rich quality of life, treatment pattern, demographic and epidemiological data across all stages of disease, treatment, and beyond.
This study is helping us understand how people feel during what has become routine treatment, and afterwards. The pilot stage has collected data in the UK but we plan to extend data collection globally in the US, Europe and Australia.
Why digital data collection?
The advantages of electronic data collection are well documented and include: reduced administrative burden for participants and administrators; the avoidance of errors in data collection and entry; and fewer items of missing data. Participants at Melanoma UK patient consultation events were overwhelmingly in favour of electronic data collection because unlike paperwork, it cannot be lost and they can complete questionnaires when they want to.
How do patients benefit?
Participants benefit from monitoring and recording how they feel, and the platform provides a convenient way for them to share their data with friends, family and healthcare professionals. Development of this platform has been collaborative.
At a UK Melanoma Patient Conference, we canvassed future participants on the functionalities that they would have used. Based on this extremely positive feedback, features such as: Community; Symptom Tracker; Knowledge; consultation Checklists; and events Timeline have been built into the app. Our digital platform was co-created with patients and we hold regular patient feedback and beta testing sessions to find out how to improve the user experience.
Who can access the data?
The data are available free of charge to academic researchers, and through a subscription service to industry. The powerful online portal gives access to dashboards combining graphical representation of the data with appropriate statistical analysis, allowing data to be used readily in models and publications.