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Melanoma UK Digital Patient Registry

The app is now available to download!

To install the app, go to the Google Play store (for Android) or Apple App store (for iOS) on your device and search for Melanoma UK, and download the app. For further details, see below. If you have any issues with the app, please visit our FAQs page in case it has already been covered.

 

Introducing the Melanoma UK digital platform

Melanoma UK has been working with healthcare company Vitaccess to develop a digital platform to collect 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 or tablet to complete questionnaires or surveys at their convenience. Data are immediately submitted to a central data platform; users of the platform can see and analyse the aggregated data in real time.

What data are being collected?

The platform will collect rich demographic and epidemiology data across all stages of disease, treatment, and beyond.

Initially, the platform with collect data on quality of life in people living with and being treated for melanoma in the real-world setting. To date, such data have been collected only in the somewhat “artificial” setting of clinical trials. This study will help us to understand how people feel during what has become routine treatment, and afterwards. The pilot stage will collect data in the UK but we plan to extend data collection globally.

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 a recent Melanoma UK patient consultation event were overwhelmingly in favour of electronic data collection because paperwork cannot be lost and they can complete questionnaires when they want to.

Screenshots from the Melanoma UK app

 

 

 

 

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 the recent 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 a daily pain diary, knowledge centre, consultation checklists and events timeline have been built into the platform, as shown in the screenshots above.

Who can access the data?

The data will be 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.

For more information:

Please contact:

Melanoma UK: www.melanomauk.org.uk

Gill Nuttall Gillian.Nuttall@melanomauk.org.uk

Di Cannon Diane.Cannon@melanomauk.org.uk

Vitaccess: www.vitaccess.com

Dr Mark Larkin mark.larkin@vitaccess.com

 

Further details:

Once installed, the app will then ask you a few questions to confirm your eligibility. You will need your NHS number (or CHI number in Scotland) to complete this questionnaire, so please have it ready. If you have a CHI number it can be used in the box where you are asked for NHS number.

If you are eligible, you will see more detailed information about the study, including “informed consent” questions that you are asked to agree to. This is a standard step for any study involving patients. By giving informed consent, you agree that you understand what the study involves and that you are happy to take part.

When you have successfully completed the eligibility and informed consent steps, you will then receive your username and password to login to the app. Please be sure to check your spam folder in case the email goes there instead.

Initially, you will use the app to complete some short, simple questionnaires. Information is sent from the app to a central database over a secure connection. This is just the start, though! Over the next few weeks, the app will add useful features to help you manage your melanoma, such as a symptom diary, based on feedback we’ve had from the melanoma community. If you’d like to be involved with helping to shape the app development, please contact us at melanoma@vitaccess.com. To get the latest features when they are available, either visit the app store regularly or set your phone to auto-update new versions (see instructions for Android and iPhone).

We do hope you will take part in this study and that you will find the app useful. Your participation would contribute to vital understanding about patients living with melanoma. If you are willing at this stage, please follow the instructions below to install the app.

To install the app, go to the Google Play store (for Android) or Apple App store (for iOS) on your device and search for Melanoma UK, and download the app.

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 have any issues with the app, please visit our FAQs page in case it has already been covered.

Contact us now if you need to talk.

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