What is Consent for Contact? (C4C)

We are looking for people who are interested in taking part in research that contributes to better health for people with physical and/or mental health-related problems. We are creating a register of people who might be interested in taking part in current or future research projects and we need your help.

Volunteers who take part in research play a crucial role in improving the lives of thousands of people. Research is the only way to develop better treatments and nearly all research at some point needs the help of those affected by particular health conditions in order to develop these treatments. You can help us to achieve this. As a first step, we are creating a list of people who would be willing for researchers to contact them about agreeing to take part in a study that interests them.

All researchers work for or are approved by North East London NHS Foundation Trust (NELFT). At this stage, we’re not asking you to agree to any particular study. If you agree to join this register you’re giving your consent for researchers to look at your NELFT medical records. Your medical records contain notes and information about your health, treatment and care plan which we store electronically on our computer system. By using your records, researchers can check if you might be suitable for a specific research project based on different aspects of your health, for example, your symptoms or your medication. When approached about any specific study you will be able to agree or not to participate. At any time you can ask to be removed from this register.

We’re asking to access your full clinical record with NELFT; we don’t need to see any other records.

What type of research could I be involved in?

We research the causes and consequences of physical and mental health problems, from childhood through to end of life. There are many types of research projects you can take part in, including studies trying to discover the cause of certain conditions and others testing new or improved treatments and services. Researchers use different methods to help with answering their questions. They could ask you to take part in an interview, a questionnaire or fill in a week-long diary. Other studies may ask you for a blood sample or to have a brain scan. But we will always let you know the research method being used before you agree to take 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’ll give you a copy of this information leaflet to keep. Even if you agree for your name to be on this register, there’s no commitment to take part in any particular research project. If you agree, it just means that you’re allowing our researchers to contact you if they think you might be suitable for a particular project. It’s possible that they may not contact you at all, or they may contact you about a study that’s not directly relevant to your symptoms. Our researchers will discuss the particular project in more detail with you and give you time to think about taking part. You’re then free to agree to take part or not, without giving a reason.

You’re free to leave the C4C research 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 or contact the Register administrator (contact details below). This won’t affect your care in any way. There may not be a project suitable for you to take part in straightaway, but we’ll keep you updated about what research is being done through a twice-yearly newsletter.

What will happen 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 an ‘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 the verification checks can see personal information and other information in your record. But when considering this, it’s important you realise that any piece of information in your medical record could be used as a basis for contacting you in the future. If you want to take part but don’t want a particular part of your record to be used in this way, and then please let your NELFT health care practitioner know and they will record this.

If you’re interested in finding 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.