Patients

The National Consortium of Intelligent Medical Imaging (NCIMI) is a partnership between NHS trusts, research organisations, and patient groups, coordinated by the University of Oxford. 

Through this partnership NCIMI aims to facilitate the development of algorithms for imaging, providing organisations with access to patient data while protecting the interests of patients, clinicians, and the NHS. 

Medical imaging (or ‘scanning’) allows doctors to ‘look inside’ a patient’s body. It is an important tool in the diagnosis of injury and illness. It can also help us better understand the progression of disease and choose the most effective treatment. Medical images are assessed by highly trained doctors called radiologists.  

We aim to develop ‘intelligent’ tools to support radiologists in their analysis, so that we can provide faster and more accurate results and better patient care.

Intelligent Medical Imaging uses computer programs (called ‘algorithms’) which can be trained to analyse medical images. Training these algorithms requires large amounts of data, so that the algorithm can ‘learn’ to recognize a normal scan or detect different kinds of abnormalities. Once developed, these algorithms can be used to support doctors in analysing scans, to increase their speed and accuracy. The data that you contribute will be used to help design and train these algorithms, as well as contributing to other health research studies. 

Over the past 30 years, medical imaging such as X-Ray, MRI and CT scans have transformed how medical professionals diagnose diseases and chronic conditions. Every year the NHS performs 40 million scans, but these are not stored or analysed in the same way throughout the NHS. Subject to patient consent, NCIMI’s aim is to collect this kind of information inside one secure central research database. By creating a source of high-quality data from a large number of patients across the UK, the NCIMI database will allow researchers to make the best use possible of patient data.

You are being invited to join the National Consortium of Intelligent Medical Imaging (NCIMI) Research Database, to contribute to the development of new imaging tools. The NCIMI Research database aims to promote the development of new technology, to better diagnose and treat patients, by: 

• Providing patients with the opportunity to take part in important research studies, which will benefit patients across the UK, both now and in the future. 

• Providing researchers with controlled access to research data from large numbers of people.

Participation is entirely voluntary. Your hospital will take the initiative and ask you if you want to take part. 

If you decide to take part, NCIMI will give you more detailed information and ask you to sign a consent form for the release of your medical information by your hospital to NCIMI. You will remain free to withdraw this at any time and do not have to give any reason. 

Your clinical care or treatment (if you are undergoing treatment) will NOT be affected in any way by your decision to take part or not to take part. NCIMI is simply collecting information and NCIMI will have no influence on your ongoing treatment(s).

The majority of individuals who agree to be part of the NCIMI Research Database will not have to do anything additional. If you are happy to take part and have had the opportunity to ask questions we will ask that you sign a consent form.  

This will allow NCIMI to access your medical record and to store this medical information in the NCIMI Research Database. We collect information such as: heart rate, blood pressure, weight, medications and scan results from examinations such as x-rays or CT scans and/or biopsies you may have had previously.  This level of detail is needed to develop a high-quality central database built upon detailed patient level records.   

A small number of individuals who choose to take part may also be asked to have further scans or to have blood taken. You are under no obligation to take part in this, and we will discuss this fully with you. You can withdraw at any time without this affecting your clinical care or treatment (if you are undergoing treatment).   

You may be asked to undergo an MRI and/ or a blood test for research purposes. You are under no obligation to undertake these tests. You can still choose to take part in the NCIMI Research Database without taking these additional tests. If you have any questions about these tests, we will discuss them fully with you. You can withdraw at any time without this affecting your clinical care or treatment (if you are undergoing treatment).

It is completely up to you to decide whether or not to take part; participation is entirely voluntary. If you do decide to take part, you will be asked to sign a consent form. You will remain free to withdraw at any time. You do not have to give a reason and this will not affect your clinical care or treatment (if you are undergoing treatment).

By participating in the NCIMI Research Database you will be making a valuable contribution to the development of intelligent medical imaging in the NHS, which has the potential to improve diagnosis and treatment across a wide range of injuries and illnesses. While participation in the NCIMI Research Database is not expected to benefit you directly, the research you help to enable will help to improve the quality of care for patients like yourself in the present, and future. 

For those individuals who agree to share their data and have it stored on the NCIMI Research Database we do not foresee any risk to you. 

If you are being asked to consent to any additional tests, we will explain any risks and give you the opportunity to ask any questions you have.  

Additional tests may include all or some of the following: 

• An MRI Scan: As a part of agreement to a specific research project, you will also be asked to undergo an MRI scan (‘magnetic resonance imaging’). An MRI scan is a painless and safe procedure that uses a strong magnetic field to produce images of the organs in your body. Experienced clinical staff will conduct several safety checks before you have your MRI scan. You will be asked if you have any metal in your body to ensure this is a safe scan for you to undertake. We will ask you to fast for a minimum of 3 hours before your scan. MRI scans involve lying flat in a confined space, which some people can find uncomfortable. The MRI scanner is noisy, but you will be given headphones to try to minimise the noise you hear whilst undergoing your MRI scan. You will also be given an emergency button, which you press to let staff know that you would like to stop the scan. The scan lasts about 30 minutes in total. 

• A Blood test: As a part of agreement to a specific research project, you will asked to provide a small sample of blood (up to a maximum of 30ml). This will be scheduled to happen when you are already attending the hospital and already have a needle inserted in your arm, so that no additional needle will be inserted. You may feel some discomfort when your blood is taken, and there may be a small bruise at the site where the needle goes in. These complications are usually minor and go away shortly after the tests are done. Very rare potential risks associated with taking blood include a blood clot (thrombosis), some inflammation around where the needle was inserted, and infection. 

All of the scans we store in the NCIMI research database will have already been assessed by one of your doctors in your NHS Trust or Hospital Board to check for abnormalities. If an abnormality is detected, it will be investigated through the usual channels of clinical care. 

You are being invited to join the National Consortium of Intelligent Medical Imaging (NCIMI) Research Database, to contribute to the development of new imaging tools. The NCIMI Research database aims to promote the development of new technology, to better diagnose and treat patients, by: 

• Providing patients with the opportunity to take part in important research studies, which will benefit patients across the UK, both now and in the future. 
• Providing researchers with controlled access to research data from large numbers of people.

Participation is entirely voluntary. Your hospital will take the initiative and ask you if you want to take part. 

If you decide to take part, NCIMI will give you more detailed information and ask you to sign a consent form for the release of your medical information by your hospital to NCIMI. You will remain free to withdraw this at any time and do not have to give any reason. 

Your clinical care or treatment (if you are undergoing treatment) will NOT be affected in any way by your decision to take part or not to take part. NCIMI is simply collecting information and NCIMI will have no influence on your ongoing treatment(s).

The majority of individuals who agree to be part of the NCIMI Research Database will not have to do anything additional. If you are happy to take part and have had the opportunity to ask questions we will ask that you sign a consent form.  

This will allow NCIMI to access your medical record and to store this medical information in the NCIMI Research Database. We collect information such as: heart rate, blood pressure, weight, medications and scan results from examinations such as x-rays or CT scans and/or biopsies you may have had previously.  This level of detail is needed to develop a high-quality central database built upon detailed patient level records.   

A small number of individuals who choose to take part may also be asked to have further scans or to have blood taken. You are under no obligation to take part in this, and we will discuss this fully with you. You can withdraw at any time without this affecting your clinical care or treatment (if you are undergoing treatment).   

You may be asked to undergo an MRI and/ or a blood test for research purposes. You are under no obligation to undertake these tests. You can still choose to take part in the NCIMI Research Database without taking these additional tests. If you have any questions about these tests, we will discuss them fully with you. You can withdraw at any time without this affecting your clinical care or treatment (if you are undergoing treatment).

It is completely up to you to decide whether or not to take part; participation is entirely voluntary. If you do decide to take part, you will be asked to sign a consent form. You will remain free to withdraw at any time. You do not have to give a reason and this will not affect your clinical care or treatment (if you are undergoing treatment).

By participating in the NCIMI Research Database you will be making a valuable contribution to the development of intelligent medical imaging in the NHS, which has the potential to improve diagnosis and treatment across a wide range of injuries and illnesses. While participation in the NCIMI Research Database is not expected to benefit you directly, the research you help to enable will help to improve the quality of care for patients like yourself in the present, and future. 

For those individuals who agree to share their data and have it stored on the NCIMI Research Database we do not foresee any risk to you. 

If you are being asked to consent to any additional tests, we will explain any risks and give you the opportunity to ask any questions you have.  

Additional tests may include all or some of the following: 

• An MRI Scan: As a part of agreement to a specific research project, you will also be asked to undergo an MRI scan (‘magnetic resonance imaging’). An MRI scan is a painless and safe procedure that uses a strong magnetic field to produce images of the organs in your body. Experienced clinical staff will conduct several safety checks before you have your MRI scan. You will be asked if you have any metal in your body to ensure this is a safe scan for you to undertake. We will ask you to fast for a minimum of 3 hours before your scan. MRI scans involve lying flat in a confined space, which some people can find uncomfortable. The MRI scanner is noisy, but you will be given headphones to try to minimise the noise you hear whilst undergoing your MRI scan. You will also be given an emergency button, which you press to let staff know that you would like to stop the scan. The scan lasts about 30 minutes in total. 

• A Blood test: As a part of agreement to a specific research project, you will asked to provide a small sample of blood (up to a maximum of 30ml). This will be scheduled to happen when you are already attending the hospital and already have a needle inserted in your arm, so that no additional needle will be inserted. You may feel some discomfort when your blood is taken, and there may be a small bruise at the site where the needle goes in. These complications are usually minor and go away shortly after the tests are done. Very rare potential risks associated with taking blood include a blood clot (thrombosis), some inflammation around where the needle was inserted, and infection. 

All of the scans we store in the NCIMI research database will have already been assessed by one of your doctors in your NHS Trust or Hospital Board to check for abnormalities. If an abnormality is detected, it will be investigated through the usual channels of clinical care. 

People who do not need to know who you are will not be able to see your name or contact details. Your data will have a code number instead.  

We will keep all information about you safe and secure.  

We have strict measures in place to protect the security of your data, and ensure it is kept confidential.  

• We do not include any details which make you identifiable. 
• We keep any information that could identify you (e.g. your NHS number) separately from other information in the Research Database. 
• If your information is transferred using your NHS number – (this may be done in some sub-studies to ensure that the data about you is able to be linked and not mixed up) – this data will always only be transferred to the NHS Radiology Research Facility in the Churchill Hospital in Oxford, and only viewed by Oxford NHS staff. It will immediately be anonymised in Oxford and only anonymised data will ever leave the NHS facility in Oxford. 
• We use firewalls and other security measures to block unauthorized access to the computers which hold personal information. 
• All of our procedures comply with international standards, including the General Data Protection Regulations (GDPR). 

Data protection regulation provides you with control over your personal data and how it is used.  When you agree to your information being used in research, however, some of those rights may be limited in order for the research to be reliable and accurate. Further information about your rights with respect to your personal data is available at: http://www.admin.ox.ac.uk/councilsec/compliance/gdpr/individualrights/ 

Data protection regulation also requires that we state the legal basis for processing information about you.   

The legal basis for the processing of data about you will be 

• GDPR Article 6(1)(e):  

• the Processing is necessary for the performance of a task – namely research – carried out in the public interest. 

And in the case of Special Categories of Personal Data,  

• GDPR Article 9(2)(j): 

• Processing is necessary for archiving purposes in the public interest, scientific or historical research purposes, or statistical purposes. 

We will store the information you provide on secure servers in the Big Data Institute at the University of Oxford. This data will be kept for several years and used by approved researchers for medical and other health-related research and product development. 

It is not possible to say exactly what kinds of studies will be carried out in the future using this data, because technology changes rapidly and researchers may discover new ways for the data to be used.  

NCIMI will ensure that your data is used responsibly and will not provide any information to researchers which may identify you. You are encouraged to find out more about our latest work, and research findings generated by the NCIMI research database, by visiting our website: 

www.ncimi.co.uk 

Only approved researchers will have access to NCIMI data. This will include researchers at UK universities and research institutions, scientists working in countries outside the UK, and in commercial companies. The NCIMI data access committee, composed of expert researchers, ethicists, and representatives of the public, are responsible for approving data access. 

Some of your information will be accessed by approved researchers in countries outside the UK. They must follow all the same rules as UK-based researchers to keep your information safe.  

We will never pass your information to insurance companies, or employers. We will not allow relatives to access your information without your permission. Any access to your information by legal authorities (e.g., police) will be done in accordance with data protection regulations (i.e., GDPR).

Research results will be published in journals and may be shared at conferences. You will not be identified in these publications.   

Scientists and researchers who use the data from the NCIMI Research Database must make public the results of all research so that everyone can benefit from its findings. We have also developed agreements with commercial partners to ensure that the NHS receives ‘fair value’ for health data. For more information about our work ensuring fair value visit the NCIMI website: ncimi.co.uk 

Please contact: 

Chief Investigator: Professor Fergus Gleeson 

Study Office: National Consortium of Intelligent Medical Imaging (NCIMI), The University of Oxford, Big Data Institute, Old Road Campus, Roosevelt Drive, Oxford, OX3 7LF 

Email: ncimi@oncology.ox.ac.uk 

Telephone number: 01865 618184