Melanoma UK


Listed in: Skin cancer  Medical research  
Melanoma UK

Available on:



(click to download)

Supported languages:

English

Cost:

Free

Patient registry app to record real world evidence from people with melanoma. 

Approved by


Languages

English

Countries of use

Initially UK, with plans for wider data sharing. 

Cost

Free

Developer

Vitacess with Melanoma UK
(Based in United Kingdom)
http://www.melanomauk.org.uk

Funder

Vitacess with Melanoma UK

Medical Adviser

Vitacess with Melanoma UK

Features

Allows networking with other people like me / Family / Friends Allows networking with other people like me / Family / Friends
Support to deal with symptoms/disabilities Support to deal with symptoms/disabilities
Self-monitoring Self-monitoring
Trackers Trackers
Information Information

Summary

App to gather real-world evidence from patients living with, and being treated for, melanoma. 

Participants receive questionnaires to complete via the app on their smartphone or tablet.


The app was: 

  • jointly developed by the patient group Melanoma UK and Vitaccess, a healthcare research company
  • co-created with patients. 

People with melanoma are able to:

  • access information on the disease through a knowledge base
  • use tools to record how they are feeling
  • connect with other people to share experiences
  • complete pain diaries to help track symptoms and quality of life
  • prepare for clinical meetings with consultation checklists
  • plan and track significant events. 


Tags: Health, Wellness & Care in the Community (HWCC)  ·  Medical

Reviews

Reviewer: Patient group which developed the app, Melonoma UK
Review:

“Melanoma UK has been working with healthcare company Vitaccess to develop a digital platform to collect data from people living with melanoma….

…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.

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.

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.

Data will be available free of charge to academic researchers, and through a subscription service to industry.”


Source: http://bit.ly/2Fceu8s
Usage: Not specified
Weblink of reviewer: http://bit.ly/2qXZCp4
Reviewer: Gillian Nuttall, Diane Cannon, Melonoma UK, and Mark Larkin, Vitaccess
Review:

Data domains addressed in the app include:

  • “Demographics
  • Lifestyle and exercise
  • Previous and current treatments
  • Symptoms
  • Adverse events
  • Health resource utilisation.”

Research questions addressed by the app include:

  • “Impact of treatments
  • Treatment patterns
  • Equity of care
  • Quality of life.” 

Source: http://bit.ly/2r0RFzR
Usage: Not specified
Weblink of reviewer: http://bit.ly/2qYpe5l

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