MyMelanoma will use computers to collect data: both directly from MyMelanoma participants and from health care providers (in the UK, the NHS) where participants' records are stored.
The availability of digital national health data from the NHS is a relatively new development for research in the UK; digital information is held by the NHS about nearly all of us. It is very important to the providers of health services that records are kept about cancers and infections, as we have seen during the COVID pandemic.
The government and NHS has worked hard to improve the accuracy of the stored data and to make it work for the benefit of the whole population by giving carefully controlled access to anonymous data for researchers. Harnessing this resource is the only way MyMelanoma can collect information from enough melanoma patients accurately and in sufficient numbers, to make a real difference. We will seek your consent to access this NHS data if you consider taking part in the study.
In order to collect information from participants, the MyMelanoma team must communicate very well with those participants; we will use software which allows that contact to be mainly by e-mail. We will use texts and phone where needed.
The most important thing that we have had to address is how we can collect information and keep it safe, and we have described the measures put in place to ensure this in the Information Package. We also need to ensure that we describe the commitment people are making when they join the study, as clearly as possible and that participants fully understand what their consent means. This information text and the consent forms have been reviewed by 23 melanoma survivors and subsequently revised. These documents will shortly be submitted for approval by the national UK ethics committee, but you can see these now using the "Information for people considering taking part" tab.
When sufficient information is gathered from enough people to be very useful in terms of providing the resource for medical scientists to work with, then the data will be made available to researchers. That information will be anonymous (scientists using the data could not know from whom the information came) and released only to bona fide workers by the body currently known as Public Health England.
To sign up to be part of MyMelanoma or if you have any further questions for us then please fill out the form. One of our team will be in touch as soon as possible.