Privacy Statement

The UK Collaborative HIV Cohort Study (UK CHIC).

The UK CHIC study is organised by a study team at University College London, Institute for Global Health. The study is funded by a grant from the Medical Research Council.

The UK CHIC study investigates the immunological and virological response to antiretroviral treatment, and the clinical outcomes of treatment in the UK. The study makes use of data that are routinely collected in a number of NHS HIV clinics in the UK, for people with HIV who have attended for care since 1996.

Routinely collected information regarding antiretroviral treatment and laboratory markers, CD4 cell counts, viral loads, survival, diseases and hepatitis coinfection. 

We do not collect directly identifiable personal data such as name, address or postcode. We do collect a minimum number of data items that are needed to run the study and these are stored securely within the study database. They are used to link and merge records for patients we think have attended more than one centre for care, so they have only one study record for data analyses.

All these data items are removed or anonymised for the final datasets used for research analyses. 

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The purpose and legal basis of collecting and processing information in the UK CHIC study is for the performance of a task carried out in the public interest, and for scientific research. The research investigates the clinical outcomes, the response to treatment and the epidemic dynamics of HIV-1 in the UK.

The UK CHIC study enables scientific research into the uptake and response to therapy among individuals with HIV in the UK. This leads to a greater understanding of HIV infection...

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Once a year, the participating NHS HIV clinics transfer the data required for the study to the study team; all these transfers are within the UK. Data are sent in an electronic format and by secure transfer methods.

The data from each HIV clinic are checked, cleaned and merged. Each year an anonymised dataset is produced for collaborators to use for research analyses.

Proposals for research analyses come from the UK CHIC study group and from collaborations with other HIV...

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Data are encrypted, then sent by secure transfer methods to the study team. The data sent and the database itself are stored on separate servers at the Medical Research Council Clinical Trials Unit at University College London (MRC CTU at UCL).

Data are processed and the study database can only be accessed by a few named individuals.

Datasets used for research analyses are anonymised.

By removing clinic identifiers and anonymising the dataset before it is used for...

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University College London

Yes, only the minimum pieces of information are securely transferred to a number of other UK HIV studies, so that records can be correctly linked. Linking records then enables anonymised data from two studies to be used for more research analyses, and on a broader range of topics.   

We link or previously have linked records between UK CHIC and other UK HIV studies that are or were also managed within UCL: the UK HIV Drug Resistance database (HDRD), to understand better the...

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Part of the process to prepare annual datasets involves identifying database records thought to belong to the same individual. A computerised algorithm uses data items to compare and link records, so that data from multiple records can be merged if appropriate. This is so that an individual only has one record for research analyses. Profiling of the data assists in data cleaning and in ascertaining how suitable it is for research analyses.

Data submitted from participating centres are kept for 2 years. Data archiving is done in line with MRC guidance. The anonymised datasets used for research analyses are kept indefinitely and are archived and managed accordingly.

The anonymised datasets are not currently made publicly available. Instead, data or subsets of the data are made available to collaborators working in academic or research organisations, and we would consider applications from pharmaceutical companies. First though, collaborators must meet requirements and submit a research proposal to the study. The application is reviewed and is accepted if satisfactory.

Data for an individual can be removed from the database and will not be included in future research analysis datasets, and no further data will be sent for the UK CHIC study. Please ask your HIV doctor if you do not want your data to be included in the UK CHIC study.

If an individual attending for care at one of the collaborating HIV clinics wants to see their study record data, please speak to your HIV doctor in the first instance.

If you have a concern about how the UK CHIC study handles your information, contact the Information Commissioner’s Office (ICO) www.ico.org.uk/concerns or the ICO telephone helpline 0303 123 1113.

Datasets sent to collaborators outside of the UK are always anonymised, then encrypted and transferred securely.