IMPROVING USABILITY AND DATA CAPTURE IN THE MELANOMA UK APP
Here at Vitaccess, the Melanoma UK Digital Registry, run on a mobile application, is our first born.
It was the first Real-World Evidence (RWE) study we launched, as a joint venture with patient group Melanoma UK. The app designed for the project serves two purposes:
1. A method of collecting RWE for health researchers to improve treatments and outcomes for patients. Yes, a drug may be successful in clinical trials… but at what price? Patients need a treatment that not only fights the disease, but improves their quality of life and does not lead to debilitating side-effects.
2. A tool for patients to use, with condition-management features, such as:
a. Symptom tracker to record and track symptoms;
b. Community feature to communicate with others going through the same journey;
c. Clinically-validated knowledge section, with articles about their condition, treatments and clinical trials, developed in collaboration with The Royal Marsden NHS Foundation Trust.
Both data collection and patient usability must be considered when designing the app; these considerations feed into the design of the software, the user interface, the data structure, the features, the bathroom sink!
Throughout development and post release, we hold workshops where patients can provide feedback on the app and provide us with suggestions for future developments. Earlier this year, one suggestion that came to light and has now been released, was to break up the longer surveys about demographics and treatment pathways into sections of a profile page, which participants could update more easily; for example, when they began a new course of treatment. These profiles allow users to see their previous responses and edit, update or delete accordingly. The profile screens and functionality were designed early on in development and shown to participants, who provided positive feedback from a user point of view. However, a large part of the work was then focused around back-end development, to ensure data captured from the profiles could be easily analyzed by our data science team and researchers with subscriptions to the dataset.
When we first set about making the profile pages, the change was more for the benefit of our users, i.e., participants of the Melanoma UK Digital Registry. However, it has been a great opportunity for us to evaluate our data structure and improve the dataset for ease of analysis.
As anyone working with data knows, if little thought is put towards the structure, the time taken in cleaning and managing the data can be endless. The life sciences industry is arguably behind others in this digital age in one important way: there are copious amounts of incredibly insightful data, but no-one can analyze it! Hence, for all our digital projects, Vitaccess’s data science team spend time working closely with developers to ensure the data are easy to work with, in-line with FAIR principles, and can provide incredible RWE to improve patients’ lives.