Frequently Asked Questions (FAQs)

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About Health Research

  • What is health research?

    Health research is undertaken to learn more about people’s health and find better ways to treat and prevent disease. It 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.

    The NHS and universities regularly run research studies, sometimes these may be in partnership with commercial or pharmaceutical companies, to test the latest medicines or innovations with patients. All research is regulated to ensure safety of participants. Sometimes people participating in research are paid for their time.

  • Why is a research register needed in North West London?

    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.

  • How do research studies work?

    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

  • Which diseases are being researched?

    North West London has an impressive health research history, and this covers a huge range of ailments from what some might see as trivial to debilitating and life-limiting illnesses such as cancer, diabetes and dementia. The range is vast.

  • What will researchers find out about me from my information?

    Information about your health is stored in various NHS computer records. Sometimes this is used to plan health services or carry out health research. If and when your information is used in this way, your personal details and identifiers are removed so you cannot be identified (the data is 'de-personalised'). To find out more on how data is used in the NHS and research please visit: https://understandingpatientdata.org.uk/

    When you register for Discover, you are giving permission for the Discover Team (employees of Chelsea and Westminister Hospital NHS Foundation Trust):

    1. To add your consent to to be contacted about research, to your integrated North West London NHS medical record (click here to find out more)

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

    In practice, a researcher may conduct a search on the de-personalised North West London medical records to find people who are over the age of 40, have diabetes and have registered with Discover. The researcher can then ask the Discover team to re-identify those people who have matched the search criteria and contact them about the research opportunity.

    Researchers will not be able to identify or contact you until you have given permission to the Discover team for this to happen. You can withdraw at any point throughout this process, without this affecting your care or legal rights.

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

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

About Discover

  • What is Discover?

    Discover 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.

  • Who can join Discover?

    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.

  • How will my information be used?

    Information about your health is stored in various NHS computer records. Sometimes this is used to plan health services or carry out health research. If and when your information is used in this way, your personal details and identifiers are removed so you cannot be identified (the data is 'de-personalised'). To find out more on how data is used in the NHS and research please visit: https://understandingpatientdata.org.uk/

    When you register for Discover, you are giving permission for the Discover Team (employees of Chelsea and Westminister Hospital NHS Foundation Trust):

    1. To add your consent to to be contacted about research, to your integrated North West London NHS medical record (click here to find out more)

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

    In practice, a researcher may conduct a search on the de-personalised North West London medical records to find people who are over the age of 40, have diabetes and have registered with Discover. The researcher can then ask the Discover team to re-identify those people who have matched the search criteria and contact them about the research opportunity.

    Researchers will not be able to identify or contact you until you have given permission to the Discover team for this to happen. You can withdraw at any point throughout this process, without this affecting your care or legal rights.

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

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

  • Who is the Discover team?

    The Discover team is a small team of people who are responsible for promoting the Discover 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.

  • What do we mean by ‘research register’?

    Many people in North West London would like to contribute to health research, but it is often difficult for them to find out what research is happening and which studies they may be suitable for. It is also difficult for researchers to identify suitable people to take part in their research. We want to make it easier for all people, healthy or those who may have a medical condition, to become involved with health research by simplifying the process used by researchers to find people. We have therefore developed a register that people join by providing their name and some descriptive details to say that they are willing to be approached about possible participation in research studies.

  • Why should I join Discover?

    The aim of Discover is to make it easier to carry out health research in North West London. Health research is essential to learn more about people’s health and find better ways to treat and prevent disease. 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 Discover 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.

  • Do you need to be unwell or have an existing health condition?

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

  • Is Discover part of the NHS?

    Yes. Discover was founded by Imperial College Health Partners, a partnership of NHS organisations and universities in North West London, in association with The Scottish Health Research Register (SHARE)

Joining Discover

  • How do I join Discover?

    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 which can be found online or at the back of the patient information leaflet.

  • How long will it take to sign up?

    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.

  • What will happen if I join?

    You will be invited to sign up to the Discover register by giving your name, date of birth and postcode. Your details will be held on a secure NHS register. You will receive a request to verify your details to ensure full data security.

    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 Discover and match the search criteria, the researcher can ask the Discover team to re-identify you - the researcher will not be able to do this.

    Only the Discover 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.

    If you are interested in finding out more, the Discover team will pass your contact details on to the researcher who will get in touch with you to discuss it further.

    You decide if you want to take part. It is your choice and you can say no.

  • How often will you contact me about potential studies?

    You decide the number of times in one year we can let you know about relevant health studies – this could be up to four times a year. It is your choice and you select your preference at registration.

  • Does joining Discover mean I have to participate in a health research study?

    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.

  • Could there be any risk to my health in taking part in a research study?

    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.

  • Will I get paid if I take part in a study?

    Financial incentives are a feature of some research studies and others may cover expenses.

  • How will I be contacted?

    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 post, email and / or telephone.

  • Am I going to be bombarded by information from Discover?

    You decide if you want to receive information from the Discover 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.

Use of your information and confidentiality

  • How will my information be used?

    When you register for Discover, you are giving permission for the Discover Team (employees of Chelsea and Westminister Hospital NHS Foundation Trust):

    1. To add your consent to to be contacted about research, to your integrated North West London NHS medical record (click here to find out more)

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

    The NHS uses your information to develop and improve health and care services for the future. It can also be used in research to find cures and better treatments for diseases like diabetes and cancer. To protect your privacy all personal identifiers like your name, address, telephone number are removed ('it is de-personalised'. To find out more on what this means click here). Sometimes researchers want to identify people so they can invite them to participate in a research study. 

    This can only be done with your consent. We want to invite you to join the Discover Health Research Register so we (the Discover Team) can contact you about research you may be interested in (the researcher cannot do this directly). The Discover team will not know anything about the proposed research or be able to see your medical records, they will just be able to see your contact details.

    If you are interested in finding out more, the Discover team will then pass your contact details on to the researcher who will get in touch with you to discuss it further. There is no obligation to take part and you can say no at any point throughout the process. 

    All research is regulated by the Health Research Authority to ensure safety of participants.

    Your participation in research is voluntary and you are free to withdraw at any time without giving a reason and without your medical care or legal rights being affected. 

    You set the limit on how often you want to be contacted about appropriate research opportunities, this is limited to a maximum of four per year.

    Should you have any queries about the way that your data will be, or has been, processed then please use this link to contact the Discover team

    Your privacy is extremely important to the NHS and Discover, and your full identifiable medical record will never be seen without your consent. Any information your provide will be kept confidential and will be processed in accordance with UK Data Protection Law.

  • I am worried about confidentiality

    Information you provide when you sign up with Discover will be stored securely on NHS servers in the UK. When a suitable research study comes up you may be contacted by the Discover Team to see if you would like to take part. The Discover 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 Discover 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 privacy is extremely important to the NHS and Discover, and your full identifiable medical record will never be seen without your consent.

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

  • Will my taking part in a study be kept confidential?

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

  • What safeguards do I have that my personal health records will remain confidential?

    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.

  • How long will my name stay on the register?

    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.

  • What if my contact details change?

    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.

  • How do I leave the register if I want to?

    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.

  • Where will the Discover Register be stored?

    The Discover register will be stored in an NHS Digital accredited safe haven, alongside many other NHS data sets which are routinely and securely stored within this organisation. Safe havens have a number of security policies and enhanced security infrastructure to protect NHS data and ensure it is used appropriately. Only approved and trained staff can access the data and only for specific purposes which have been approved.The North East London Commissioning Support Unit will be the assigned safe haven which will store the register. If you would like to learn more about the North East London Commissioning Support Unit please click this link: http://www.nelcsu.nhs.uk/

  • I am worried about my data being leaked, what assurances can this programme provide?

    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.

  • What does anonymous, unidentifiable and personal data mean?

    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.