What is it?

The Melanoma UK 'My Melanoma App' is a joint venture between the Royal Marsden NHS Foundation, Vitaccess and us. It is financed by Vitaccess and, at Melanoma UK, we are proud that we can offer you a modern and easy way of managing your condition whilst helping research to improve care.

This ground-breaking study aims to develop a database about how melanoma impacts your daily life. The information collected is important to academic researchers, such as hospitals and universities, and to pharmaceutical companies who are developing drugs and other treatments for melanoma.

Your participation will help us understand how well treatments are working, how melanoma and its treatment affect your lives, and how this might be improved.

What's in it for me?

My Melanoma App provides a quick, easy and convenient way for you to manage your condition and connect with other people in the online Melanoma UK community whilst also helping us in this research. The most popular features in the app are:

The symptom tracker, which helps you monitor and log how you feel.

The Knowledge feature, developed in collaboration with The Royal Marsden NHS Foundation Trust and Melanoma UK’s medical advisers, is filled with information about melanoma, diagnosis and staging, statistics, causes and risk factors and more. It is updated regularly, so do check in for new information, such as our newsletters and data nuggets.

The Community feature allows people to find each other, whether they live nearby or have a similar diagnosis.

The Medical Profile is a new feature brought on by the feedback we have received from people who have been using the app. All questions about your personal information, diagnosis and staging, treatments, hospitalisations, surgeries and lifestyle are saved in your medical profile and can now be consulted and updated at any time.

What's in it for Melanoma UK?

By recording data in the app, you are financially supporting Melanoma UK. This project is based on profit share between Melanoma UK and Vitaccess. Academics (like universities) get free access to the anonymised data, but private sector companies (like the pharmaceutical industry) pay for access. Subscriptions from pharmaceutical company researchers have already enabled Vitaccess to donate £10,000 to Melanoma UK towards an Automated Total Body Mapping (ATBM) mole mapper for Royal Liverpool & Broadgreen University Hospital NHS Trust. 

Since June 2019, My Melanoma App features a rewards scheme. For each survey you complete, Melanoma UK receives a £1 donation. By participating in our study, you’re not only helping research, you are also helping Melanoma UK provide support to melanoma patients. The funds raised will go toward our appeals. Within the first 7 months of its launch, the rewards scheme has raised £1,000.

To find out each month how much the app has raised, download it and fill out your surveys. You can also follow us on social media at @MelanomaUK and @myrealworlddata.

How much does it cost?

The app is free and can be downloaded on your smartphone. It will ask you to complete surveys and questionnaires. When you have completed a survey, the data are immediately sent securely to our central database, anonymised and included in the overall dataset available to researchers. You can install the app on more than one device and use the same login credentials on each device.

How does it work?

Data are collected in the real-world setting using “bring your own device” (BYOD) technology – participants use their own smartphone or tablet 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 demographic and epidemiology data across all stages of disease, treatment, and beyond.

The platform collects data on quality of life in people living with and being treated for melanoma in the real-world setting. Before then, such data have been collected only in the somewhat “artificial” setting of clinical trials. This study is helping us understand how people feel during what has become routine treatment, and afterwards. The first stage of the study is collecting data in the UK but we plan to extend data collection globally, starting with Australia.

Who can access the data?

The data is 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.

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.

What is co-creation?

Our digital platform was created with the patients in mind. When we first launched, we canvassed future participants at a UK Melanoma Patient Conference on the functionalities that they would like to use.

We host regular patient feedback sessions and workshops to listen to the patient’s voice. Based on the constructive feedback received from the users, features such as a daily pain diary, knowledge centre, medical profile, community feature have been built into the platform.

What do the users have to say?

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.

To find out what people using the app have to say, watch this video: YOUTUBE

Anything we can do for patients, the resource that they have, that they can use, they can fill their symptoms in, that’s the most important thing. 

“We fight very hard to get the patients’ voice heard and too often that doesn’t happen in any kind of disease. I just think it’s a big plus.”

Carole Ayling

 

It is for patients, it’s as simple as that. It couldn’t be easier. It’s written in English, not in medical speak.

“The questions that you are asked on the app are how your lifestyle is, how you actually feel today, do you have any issues medically. They are straightforward and easy questions. Information that is sent through to the people that need to have it and which will improve patients’ lives in the future.”

Tina Manning

It does make you think about yourself because you go on and you do the surveys whereas if you’re sort of a bit like me where you just want to completely ignore everything and tip it to the back of your mind, it does make you think about your symptoms and where you’re at which is important.”

Mandy Howells

What do the users have to say?

The app is free to download from either the Apple App Store (for iPhone), or the Google Play Store (for Android).  Windows mobile phones are not supported. You have a few options to download the app, depending on which you prefer.

OPTION 1: QR CODE

Use your phone's camera to look at this QR code, and either an icon or a URL should appear on the screen.  Click on that to be taken directly to the correct app in the correct store.

OPTION 2: SEARCH THE STORE

Check in your phone's list of apps for either the Apple App Store (iPhone) or the Google Play Store (Android). In the store, search for "Melanoma UK", and click on the app with the Melanoma UK logo.  The publisher will be listed as Vitaccess Ltd.

Further details:

If the user is eligible, they will see more detailed information about the study, including “informed consent” questions that they will be asked to agree to.

If you’d like to be involved with helping to shape the app development, please contact us at [email protected].

If you have any issues with the app, please visit: FAQs 

For more information please contact:

Melanoma UK: www.melanomauk.org.uk Vitaccess: www.vitaccess.com
Gill Nuttall - [email protected] Dr Mark Larkin - [email protected]
Di Cannon - [email protected] Jon Spinage - [email protected]