Melanoma UK Digital registry
giving patients a voice to improve care
We’re often asked why the app contains the features it does, and how our relationship with patient advocacy group Melanoma UK works. We have gathered here some FAQs, asked by patients using the app, who want to understand how our collaboration works.
Why are there so many questions at the start?
Participants joining the registry may feel that there are a lot of questions to answer and legal terms to read. However, it isn’t like this throughout the study.
To understand the data we collect, we need background information about each person and their diagnosis. We collect this information at the start, and then ask participants to check that it is up to date every 6 months. You do not have to do it all at once and can go at your own pace, filling the questionnaires in stages over a few days.
There is also a detailed informed consent questionnaire to complete at the start of the study. This is a standard part of studies like this, designed to make sure participants understand why the study is being done, what we hope to learn, how we protect the data and how we will use it. This process safeguards participants and gives the research the highest level of academic rigor and credibility.
The clinically-approved questionnaires included in the Melanoma UK app about symptoms, side effects and quality of life give a realistic picture of how treatments are working and affecting daily life – from the perspective of the person completing them, not from the doctor’s perspective. This gives important information that helps us understand the reality of living with melanoma, which will help improve treatment. We cannot understand this reality from short hospital visits.
We ask participants to complete the questionnaires regularly – most are monthly – so that we can build a record of how treatment progresses. Some patients' answers don’t change much month by month – but these responses are just as valuable as answers that change more!
Why do you keep updating the app?
We are continually adding features to the app to help participants manage their condition – these are not part of the study and use is entirely optional. We just think they provide a better service.
We launched a Symptom tracker in December 2017, which participants can use to monitor how they feel. This provides a useful record that can be shared with doctors, for example.
The Knowledge feature, developed in collaboration with The Royal Marsden NHS Foundation Trust and Melanoma UK’s medical advisers, was launched in March 2018. It is filled with information about melanoma, diagnosis and staging, statistics, causes and risk factors and more. We aim to answer many of the questions asked by patients. This also includes a Clinical Trials section that is regularly updated with the help of The Royal Marsden. The feedback on our Knowledge feature has been very positive and we invite patients to visit regularly, as new content is added all the time.
July 2018 saw the launch of the Community feature, delivered in response to comments from the inspiring patients we have met. They explained they would like to help people going through the same things as them and also that they would have found access to this sort of “mentoring” helpful when they were first diagnosed with melanoma. Some patients who live alone commented that they would love to have some company when going to consultations. Others said they enjoy a round of golf or a cappuccino with each other. With any new diagnosis comes a lot of medical, financial and logistical advice to absorb. The Community feature allows people to find each other, whether they live nearby or have a similar diagnosis. They can share contact details if they want to and communicate privately outside of the app.
Who pays for what?
Vitaccess developed and financed the MyRealWorld™ digital platform. The pharmaceutical industry can buy subscriptions to use sets of data generated from the study but non-commercial researchers (e.g. the NHS, academia, NICE) get free access to the data. The data are important to researchers to understand how well treatments work in the real world, not just in clinical trials. Only anonymized data can be seen; no one can see the data for a specific participant. These subscriptions will help cover the costs of developing the platform.
Working with Melanoma UK has been key to helping us understand what matters to patients with melanoma and has helped us spread the word to the melanoma community in the UK and beyond. Any profits will be shared with Melanoma UK, to help fund the patient support activities valued in the melanoma community.
Melanoma UK plans to use this money to install FotoFinder ATBM (Automated Total Body Mapping) in hospitals in the UK. Thanks to the digital registry, Melanoma UK will know which hospitals are treating the most melanoma patients and install machines up in these hospitals. The first Schuco FotoFinder was delivered in July 2018 to The Royal Glamorgan Hospital in Llantrisant, Wales.
We sincerely thank the patients who took part in the feedback sessions and filmed interviews to share their experience of using the Melanoma UK app.
If you have been diagnosed with melanoma, you can download the app following the instructions below.
The app icon will appear on the home screen of your device. Tap on the icon to begin. Note that you can install the app on more than one device and use the same login credentials on each device. You should also change the initial password you receive to one of your choosing.
If you would like more information, please contact Melanoma UK: www.melanomauk.org.uk