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Information for research participants about how their data is used.
The CCP-UK (Clinical Characterisation Protocol – United Kingdom) is a study that collects information about infectious diseases and potential exposures of public health importance quickly and efficiently in response to potential public health crises. The study was activated in January 2020 in response to the emergence of what was then called Wuhan Flu, which led to the COVID-19 pandemic. Since being activated, we have recruited over 300,000 patients to the data collection aspect of our study. CCPUK is the largest study of its kind answering questions about COVID-19 in the world. We have also been activated for UK cases of Ebola, Monkeypox, Lassa Fever, Middle East Respiratory Syndrome (MERS) and for Children with severe Hepatitis.
Research nurses and medical students at hospitals across the UK recruited people who tested positive for COVID-19. The research nurses and medical students recorded information on patients’ hospital stay, such as whether they had any underlying conditions, what medicine they were given and what the result of their hospital stay was (discharged well, discharged disabled or death). The research team then input this information into our study database. Each patient is given a unique participant ID. No names are stored on the database and individuals cannot be directly identified.
Participants’ date of birth, NHS number and postcode are also recorded on the database. This information is hugely important for the study, which is why we cannot leave it out for confidentiality purposes. Date of birth is important to allow us to analyse the impact of age on COVID-19 outcomes. NHS numbers are important as these let us link to other NHS databases to obtain further information, such as which of our participants received a particular drug to treat COVID-19, or who has received a COVID-19 vaccine. Postcodes are important to allow us to analyse the impact of deprivation factors, such as living in a poorer area, on COVID-19 outcomes. Without these key pieces of information, we wouldn’t be able to complete most of the analysis that we have done and would not have been able to have the same positive impact on the UK’s COVID response.
In March 2020, in order to boost the UK’s response to COVID-19, the Department of Health and Social Care served the NHS with a COPI (Control of Patient Information regulations 2002) Notice, requiring them to share confidential patient information without consent for specific purposes. These specific purposes included research on COVID-19. Because of the COPI Notice, our study has been collecting data from patients admitted to hospital in the UK with COVID-19 without getting their permission first. After expiry of the COPI Notice on 30th June 2022, the study will continue collecting data without consent under Section 251 Regulation 5 of the national Health Service Act 2006 with support from the Confidentiality Advisory Group (CAG reference: 21/CAG/0125).
Being able to collect this data without obtaining permission has been very important in enabling our study to achieve what we have done. Many of the people admitted with COVID-19 were too sick to give consent themselves and because of COVID-19 precautions, they were not accompanied by relatives who could speak for them. Because we were not required to obtain consent from each of our participants, we have been able to recruit many more participants than usual and we were able to include the sickest patients who are often missed from studies like ours. We have also been able to work very quickly. Because of this, our data has been able to capture what is happening with COVID around the UK in near real-time. This allowed us to provide the health policy teams and doctors in the NHS with the most up-to-date information to guide the health response throughout the pandemic.
Because we have been able to collect and analyse this data quickly and efficiently, we have been able to achieve a lot through our study.
This all meant the people most likely to benefit from treatments and vaccines were identified in time to benefit and this saved many lives. You can review these outcomes at our website.
We make sure that the data on our database is as secure as possible. The database is only accessible by approved colleagues with passwords, and is run by IT systems with very high standards of security. The physical notes that research nurses complete before transferring the information to the database are kept in locked rooms accessed only by hospital staff, or on hospitals’ secure electronic healthcare record system.
We make sure the data is as confidential as possible by using unique participant IDs rather than names. The data collected (including date of birth, NHS number, and postcode) is only accessible by members of the study team, and is not disclosed beyond this. We intend to retain the study data (including date of birth, NHS number, and postcode) indefinitely. We have undertaken to review this retention every 5 years with oversight from the Confidentiality Advisory Group of the UK Health Research Authority.
It is possible that survivors of new diseases and exposures may go on to develop problems that we can’t imagine at present. It is impossible to understand the long-term health and social effects among survivors of new diseases or exposures unless studies are made of these survivors in the future. For example, we are now using the data from severe COVID survivors to understand “Long-COVID”. Having access to the NHS numbers allows researchers to understand health outcomes over many decades. This could be incredibly important particularly for children and the unborn children of pregnant women who are infected by new diseases or are potentially exposed to other harms of public health importance.
If you have opted out of having your data being used for research purposed via the National Data Opt-Out, we will remove your data from our database if you have been recruited. If you have not opted out of your data being used for research via the National Data Opt-Out but you would like to opt out from your data being used for our study, you can contact the study team to request this at firstname.lastname@example.org.
If you want to opt out please send us an email including your name, date of birth, NHS number and postcode. You do not need to give a reason for why you want to opt out. We will look for your details in our data and if we find it we will delete it. In any case we will email back to you within 14 days to tell you if we found your data and if we did, to confirm that your data has been removed.
You can also telephone the study team to request that your data be removed by calling 07506 653560.
Data protection regulation provides you with control over your personal data and how it is used. Further information about your rights with respect to your personal data is available here, or by contacting the study team. The University's data protection officer can be reached at email@example.com.