What is Consent for Contact? (C4C)
What is Consent for Contact? (C4C)
Consent for Contact (C4C) is NELFT’s research participation register for people who are interested in research and willing for NELFT researchers to contact them about current or future research projects.
Volunteers in research are crucial for developing better treatments and improving the lives of others. You can help the NELFT research team achieve this. We are creating a register, like a list, of people who would be willing for researchers to contact them about studies that may be of interest to them.
All researchers work for or are approved by NELFT and have completed rigorous verification checks. If you agree to join the C4C register you are giving these researchers consent to look at your NELFT medical records, which store details about your health, treatments you may be receiving and care plan on an electronic computer system. Researchers can use your records to check if you might be suitable for a specific research project based on different aspects of your record, such as your symptoms or medication. The C4C consent only asks for access to your NELFT medical records, we don’t need to see any other records.
A researcher will contact you if you are suitable for a study to ask if you would like to take part. You are under no obligation to take part, and you can ask to be removed from the C4C register at any time.
What type of research could you be asked to be involved in?
There are many different types of research projects you might be asked to take part in, including studies trying to discover the cause of certain conditions, or others that test new or improved treatments, therapies and services. Participation may include joining a group, completing a questionnaire, doing activities at home, or being interviewed. You will always know about the study and have a chance to ask questions about it before taking part.
What happens if I agree to be on the C4C register?
If you agree to be on the register, we will record your permission on your electronic health record. We will give you a C4C information leaflet to keep. Even if you agree to be on this register, there is no commitment to take part in a research project. Agreeing to be on the register means you are allowing our researchers to contact you if they think you might be suitable for a research project. It is possible we might not contact you at all, or they may contact you about a study that is not directly relevant to your symptoms. If you are contacted, you will have time to discuss the project in more detail and think about taking part. You are then free to agree to take part or not, without giving a reason.
You can leave the C4C register at any time without giving a reason. If you want to leave, ask your NELFT health care practitioner to remove your recorded permission from your electronic health record, call us on 0300 555 1200 ext 64478 or contact c4c@nelft.nhs.uk.
Leaving the register, or not taking part in a study will not affect your care in any way.
What happens if I don’t agree to be on the list?
Nothing; it is entirely up to you to decide whether you want to be on the list. This is an ‘opt-in’ rather than ‘opt-out’ system. You don’t have to give a reason for not being on the list and it won’t affect your care in any way.
What happens when I am discharged?
You will be asked if you would like to be contacted about research studies after you have been discharged from NELFT. This is entirely your decision, and if you change your mind you can let us know at any time.
Will my personal details be kept confidential?
We comply with the General Data Protection Regulation (GDPR) to make sure your confidentiality is protected at all times. Only our researchers who have gone through rigorous verification checks can see personal information in your health record. But when considering this, it is important you realise that any piece of information from your medical record could be used as a basis for contacting you in the future. If you want to join the register, but don’t want a particular part of your record to be used in this way then please let your NELFT health care practitioner know and they will record this. If you would like to find out more about the register or taking part in research you can contact us by phoning 0300 555 1200 ext 64478 or email c4c@nelft.nhs.uk.