Opt out of research

While most of our research is done on an opt in basis, participants also have the opportunity to opt out of our research studies should they wish to.  

Please note that when research is conducted using de-personalised data, with no way for researchers to identify individual patients, explicit consent from patients for use of their data is not required. For more information, please refer to the ICO Guide to the General Data Protection Regulation (GDPR).

If you would prefer for your patient data not to be used for the research listed here, you can opt out using the contacts below.

For more information about opting out, please contact dataprotection@uhs.nhs.uk.

About opting out 

As with all research collaboration agreements with non-NHS organisations, patients can opt out of any data-sharing system by emailing the trust’s data protection officer at dataprotection@uhs.nhs.uk. Patients will need to include their NHS or medical records number in any messages.

If you don't want your confidential patient information to be used for research and planning, you can opt out of this. If you do opt out, there are some specific situations where your data may still be used. Data that does not identify you may still also be used. In this case, all future research will take place excluding those who have opted out.

As with all studies on anonymised datasets, measures will be adopted to render it impossible to identify any individual patients. It is therefore not possible to opt out of research already underway for this reason.

RIPCORD2

The RIPCORD 2 study is a collaboration between University Hospital Southampton (UHS) and Liverpool Heart and Chest Hospital (LHCH). The study is comparing two strategies for managing patients undergoing investigation for known or suspected problems in the heart arteries. Those who took part can read this privacy notice.

For more information about this, or should you wish to withdraw your data from the study, please contact Zoe Nicholas on 02381 208538 or email zoe.nicholas@uhs.nhs.uk

Deciphering AMD by deep phenotyping and machine learning (PINNACLE)

Age-Related Macular Degeneration (AMD) is the commonest cause of blindness in the elderly. By 2020, 200 million people are expected to be affected with AMD, increasing to nearly 300 million by 2040. Unfortunately, doctors don’t know who will progress to the sight threatening stage of the disease. Some patients progress slowly or not at all and others quickly.

We can teach computers to analyse high resolution images of the inside of the eye. From UK Biobank and local eye clinics, we have access to hundreds of thousands of such images from people with AMD as well as those without. These images will allow us to train computers to identify what eye changes appear in patients with AMD. Alongside these images, we also have access to DNA results that we can match up to the image to see whether specific DNA changes affect the progression of AMD in individuals.

The records of patients over 50 years of age who have previously had retinal imaging performed in Southampton Eye Unit will be used for this study.

To opt out of this study, please contact PINNACLE@soton.ac.uk or call Janice Sutton on 023 8120 5049.

Investigation of Anaemia in Hospital (ISAIAH)

Currently there are no specific guidelines for doctors on how to diagnose and treat anaemia in hospital in the UK, with different approaches used depending on who treats the patient. The ISAIAH study aims to investigate current practices in a large teaching hospital, and develop new guidelines to ensure all anaemic patients receive the best possible care. 

If you were diagnosed or treated for anaemia at any stage in 2016, anonymised data from your health records may be used in the analysis for in this study.

If you would prefer for your data not to be used in this study, please email Dr James Plumb at james.plumb@uhs.nhs.uk, call 023 8120 4989 or send a letter to: Clinical Research Facility, Southampton Centre for Biomedical Research, University Hospital Southampton NHS Foundation Trust, Mailpoint 218, Southampton General Hospital,Tremona Road, Southampton, SO16 6YD.

Improving major trauma triage

Clinicians in Southampton are evaluating a tool used by ambulance crews to decide on the most appropriate hospital destination for patients involved in traumatic incidents.

If you were taken by ambulance or air ambulance to Southampton General Hospital with traumatic injuries between 1 October 2016 and 30 September 2017, anonymised data from your health records may be used in the analysis in this study.

If you would prefer for your data not to be used in this study, please email Els Freshwater at els.freshwater@uhs.nhs.uk.

CHARIOT study follow-up

Researchers are looking at one-year outcomes and readmission rates of CHARIOT study participants, to see whether the tropinin test can predict future cardiac events. Those who took part can read this privacy notice.

This would allow researchers to use the test in the future to identify the groups who are at higher risk of having a cardiac event, and better target further care.

For more information about this, or should you wish to withdraw your data from the study, please contact the coronary research group on 023 8120 8538 or email jonathan.hinton@uhs.nhs.uk

Troponin test review

Cardiac experts in Southampton are investigating whether a blood test that is used to diagnose heart muscle damage can help doctors predict the long-term health outcomes of intensive care patients and ensure they get the most appropriate treatment.

The test, which is known as a troponin test, measures levels of the protein ‘troponin’ in the blood. Normally troponin is present in blood in very small quantities but when there is damage to the heart muscle, such as during heart attack, it is released into the bloodstream causing levels to rise. A troponin test is used alongside an electrocardiogram (ECG) to help doctors determine if an individual has suffered a heart attack. However, raised troponin isn’t always the result of a heart attack and can be a sign of other forms of heart injury.

The study will analyse the routine blood tests and troponin levels of patients admitted to intensive care at Southampton General Hospital, with the aim of identifying what levels are considered ‘normal’ in this patient population.

Any patients admitted to intensive care at Southampton General Hospital during the study period who have a blood test will be included in this study.

For more information, or if you wish to withdraw your data from this study, please contact the coronary research group on 023 8120 8538, by emailing zoe.nicholas@uhs.nhs.uk or jonathan.hinton@uhs.nhs.uk, or by sending a letter to: Coronary research group, Cardiovascular and thoracic unit, Southampton General Hospital, Tremona Road, Southampton SO16 6YD.

The team now plan to assess one year outcomes from this cohort. Those who took part can read this privacy notice.

Opt out of all studies

If you do not wish for your patient data to be used for any research studies or trials, please contact dataprotection@uhs.nhs.uk.