Frequently Asked Questions (FAQs)

Health research that you may be able to participate in, ranges from:

• Answering surveys
• Having your blood tested
• Testing new and innovative medical devices
• Phone apps
• Clinical trials
• Sometimes you might be paid for your time.

NWL Health Research Register will work to prioritise research that relates to health priorities in North West London. (Click here to view the NWL population uptake broken down by disease prevalence and other demographics)

To find out more and/or share any thoughts please get in touch through our Contact page. 

People who are interested in research do not always know how to find out about it or how they can get involved. On the flip side, it is often difficult for researchers to find people who would be willing to take part in research.

We want to make it easier for all people, healthy and those who may have a medical condition, to become involved with health research by simplifying the process used by researchers to find people who may be interested in participating in health research.

Each health research study is unique and can range from participating in surveys, to having your blood tested, to testing new medical devices and phone apps and sometimes participating in clinical trials. Not all involve drug or medical intervention and may instead be more interested in lifestyle and environmental factors

North West London has an impressive health research history, and this covers a vast range of illnesses such as cancer, diabetes and dementia. 

NWL Health Research Register will prioritise research that relates to health priorities in North West London. 

Your health information is completely confidential and will be processed in accordance with UK Data Protection Law.

Your privacy is extremely important to the NHS.

When you register for NWL Health Research Register, you are giving permission for the NWL Health Research Register Team (employees of Chelsea and Westminister Hospital NHS Foundation Trust) to contact you once a relevant opportunity arises.

1. To add your consent to to be contacted about research, to your integrated North West London NHS medical record.

2. To follow up with you about potential research studies you might be interested in. 

Researchers will not be able to identify or contact you until you have given permission to the NWL Health Research Register team for this to happen. Your full identifiable medical record will never be seen. 

To find out more on how data is used in the NHS and research please visit: https://understandingpatientdata.org.uk/

NWL Health Research Register is a register of adults 18 and over living in North West London who are interested in health research and want to find out more about health research opportunities. The register is for both healthy people and also those with a medical condition.

Adults 18 and over living in North West London can join Discover. The register is for both healthy people and also those with a medical condition.

Your health information is completely confidential and will be processed in accordance with UK Data Protection Law.

Your privacy is extremely important to the NHS.

When you register for NWL Health Research Register, you are giving permission for the NWL Health Research Register Team (employees of Chelsea and Westminister Hospital NHS Foundation Trust) to contact you once a relevant opportunity arises.

1. To add your consent to to be contacted about research, to your integrated North West London NHS medical record.

2. To follow up with you about potential research studies you might be interested in. 

Researchers will not be able to identify or contact you until you have given permission to the NWL Health Research Register team for this to happen. Your full identifiable medical record will never be seen. 

To find out more on how data is used in the NHS and research please visit: https://understandingpatientdata.org.uk/

The NWL Health Research Register team is a small team of people who are responsible for promoting the NWL Health Research Register and encouraging people to join, answering queries that people may have about the register as well as working with NHS and academic researchers to find people using the register who may be relevant for research studies. They are all employed by Chelsea and Westminister Hospital NHS Foundation Trust.

A register of people who would like to support and get involved in health research.

With more people involved in research, and more research being conducted locally, advances in healthcare and medicine will follow meaning better healthcare and improved outcomes for local people.

So, by joining NWL Health Research Register you could be helping to improve the future health of the whole population - including you, your friends and family and all those you care about.

No. The register is for both healthy people and also those with a medical condition.

Yes. NWL Health Research Register was founded by Imperial College Health Partners, a partnership of NHS organisations and universities in North West London.

Joining the register is easy, safe and secure and only takes a few minutes. All you have to do is give your name, postcode and date of birth by completing the registration form.

Joining the register is easy, safe and secure and only takes a few minutes. All you have to do is give your name, postcode and date of birth.

• If you are interested in finding out more, the NWL Health Research Register team will pass your contact details on to the researcher who will get in touch with you to discuss it further.
• Only the NWL Health Research Register team will be able to see information that identifies you, for example your name and contact details. Once you are re-identified, the team will contact you about the research opportunity.
• NHS and academic researchers will search de-personalised health information to find people who may be suitable for health research opportunities.
• If you have joined NWL Health Research Register and match the search criteria, the researcher can ask the NWL Health Research Register team to re-identify you - the researcher will not be able to do this.
• You decide if you want to take part. It is your choice and you can say no.

Once a relevant opportunity arises. There is governance in place to ensure that patients are not pestered with and only approached for bonafide research which they might be interested in supporting.

Not at all. We will contact you about research opportunities relevant to you. But it is your choice if you want to find out more, and your choice if you want to take part. You can say no at any point.

Health research is undertaken to learn more about people’s health and find better ways to treat and prevent disease. Participating in health research is a great way to take a proactive role in your healthcare and the healthcare of your family and friends. All health research in the NHS is regulated by the Health Research Authority. Safety of participants is paramount.

Sometimes you may be paid for your time and expenses may be covered.

You decide how you want us to contact you to let you know about research opportunities. For example, you can opt to be contacted by email and / or telephone.

You decide if you want to receive information from the NWL Health Research Register team and the maximum number of times in one year we can let you know about relevant health research studies is four. It is your choice.

All participation is voluntary, and you are free to withdraw at any time, without giving any reason and without of your legal rights being affected.

Your health information is completely confidential and will be processed in accordance with UK Data Protection Law.

Your privacy is extremely important to the NHS.

When you register for NWL Health Research Register, you are giving permission for the NWL Health Research Register Team (employees of Chelsea and Westminister Hospital NHS Foundation Trust) to contact you once a relevant opportunity arises.

1. To add your consent to to be contacted about research, to your integrated North West London NHS medical record.

2. To follow up with you about potential research studies you might be interested in. 

Researchers will not be able to identify or contact you until you have given permission to the NWL Health Research Register team for this to happen. Your full identifiable medical record will never be seen. 

To find out more on how data is used in the NHS and research please visit: https://understandingpatientdata.org.uk/

Your privacy is extremely important to the NHS and NWL Health Research Register, and your full identifiable medical record will never be seen without your consent.

Information you provide will be stored securely on NHS servers in the UK. When a suitable research study comes up you may be contacted by the NWL Health Research Register Team to see if you would like to take part. The NWL Health Research Register Team are NHS employees who work for Chelsea and Westminister Hospital NHS Foundation Trust, and are required to keep your information and any discussions confidential. 

The NWL Health Research Register Team will not have access to your medical information and only know a limited amount about the research study you have been matched for. Once you have discussed the study, your contact information will only be passed to the researcher if you have agreed to take part in the research. 

You can withdraw at any point throughout this process without this affecting your care or legal rights.

Your health information is completely confidential and will be processed in accordance with UK Data Protection Law.

Your health information will remain entirely confidential. Patient confidentiality is paramount within the NHS.

Your health information will remain entirely confidential and be stored on a secure NHS server. Patient confidentiality is paramount within the NHS. Your full medical record will never be seen.

Once you have signed up, your name will be on the register until you request for your details to be removed. It is your choice and you can leave the register at any time.

If any of your contact details change we would ask that you let us know by giving us a call or emailing us via the Discover website.

You can leave the register at any time without giving a reason and without your medical care or legal rights being affected. You decide if you want to take part. It is your choice and you can say no. If you want to leave the register all you have to do is contact us via the website or give us a call.

The NWL Health Research Register will be stored in the Care Information Exchange platform (CIE), which is hosted within the secure NHS network. The Care Information Exchange is a secure system already routinely used to store other kinds of patient data. Patient information on the Care Information Exchange is encrypted so that only those people who have consent to view the information can do so, and only approved and trained staff can access the data and only for specific approved purposes. If you would like to know more about the Care Information Exchange, please click this link: https://www.careinformationexchange-nwl.nhs.uk/your-information

Your details will be held on a secure NHS server UK (ISO 27001 accredited). These have been audited to ensure they meet (and continue to meet) the standards for hosting NHS information.

Your full medical record will never be seen. Your information will remain entirely confidential. Patient confidentiality is paramount within the NHS.

Anonymous Data: This is information where an individual cannot be identified. This can be when data has had all identifiable elements removed, or when data from many people is combined (presented often as statistics).

Unidentifiable/De-identified/ Pseudonymous: This is information that does not identify an individual, because identifiers have been removed or encrypted. However, the information is still about an individual person and so needs to be handled with care. It might, in theory, be possible to re-identify the individual if the data was not adequately protected, for example if it was combined with different sources of information.

Personal Data/Personally Identifiable/Confidential Information: This is information that identifies a specific person. Identifiers include: name, address, geographic locators, date of birth or national health number.

For more information on the above, please see our Identifiability Demystified PDF.