How do we identify potential participants and invite them to take part in the study?
- There is a network of hospitals across England, Wales and Scotland set up to invite patients eligible for the SEARCH STUDY to take part.
- In England, the additional process by which potential participants are identified via Public Health England’s National Cancer Registration and Analysis Service (NCRAS) is outlined and shown in the diagram below.
Information about an individual’s cancer diagnosis and the investigations and/or treatment they receive is routinely shared by the NHS with the cancer registry as part of a process called ‘cancer registration’ [A]. In England, the cancer registration is run by Public Health England’s National Cancer Registration and Analysis Service (NCRAS). NCRAS has been granted specific legal permission to collect this information about cancer patients from individual’s medical records without the need to seek consent. This permission was granted to Public Health England through Section 251 of the NHS Act 2006. Every year, this support is reviewed by the Confidentiality Advisory Group of the Health Research Authority (HRA). As part of cancer registration, NCRAS records a patient’s details (including their name, address, age, sex, and date of birth), as well as detailed information about the type of cancer they have, how advanced it is and the treatment each patient receives. This information is used to build a complete picture of who has cancer in England, the type of cancer and the cancer care each patient receives. Every year over 300,000 tumours are recorded by NCRAS and this information is used to improve how the NHS delivers cancer care and to support research.
NCRAS take great care to keep the information they hold about people confidential and, as with other medical records, strict ethical and security safeguards are in place and access is strictly controlled. Information about the National Cancer Registration and Analysis Service including why information about people and their cancer is recorded, how this information is used, and how, if people wish, they can see their information or have it removed can be found here www.NDRS.nhs.uk and in the leaflet found at
https://www.ndrs.nhs.uk/wp-content/uploads/2018/05/Cancer-Registration-Information-Leaflet.pdf. A copy of the leaflet is included with information we send about our SEARCH study.
Before sharing data with SEARCH, the National Cancer Registration and Analysis Service (NCRAS) will ensure that anyone who has expressed that they do not want their data used beyond their own care have their wishes respected. To read about how to opt out of your data being used for research you can visit https://www.nhs.uk/your-nhs-data-matters/
The SEARCH research team has been granted permissions by the Confidentiality Advisory Group of the Health Research Authority (HRA) to contact potential study participants using the information collected as part of cancer registration [B]. This permission was specifically given so that we could, via the cancer registry, identify people eligible to take part and we could write to them to ask them to be part of this study. To be able to contact potential participants, NCRAS have sent us some personal data about them. This includes names and NHS numbers. This process is strictly controlled under contractual agreements.
With this information, we will contact potential participants’ doctor [C] to check that they are eligible to be invited to be part of this study.
There is no obligation to take part in our study and this will not affect treatment in any way. If people don’t want us to contact them again, their options are:
- They can see their information held by NCRAS or have it removed. Details can be found here NDRS.nhs.uk
- They can inform NCRAS they do not wish to be contacted regarding trials or studies
- They can ask the SEARCH team not to contact them again at any time
Participants can ask the SEARCH team to remove their details from the SEARCH Study at any time.