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Service users

Why take part in our research?

Health research is beneficial to everyone whether you are perfectly well or have been ill for a long time.  It helps doctors discover what causes ill-health as well as developing new medicines and healthcare.  Research also helps us improve our health services so that you can be assured of the most advanced and best quality care.  The C&I research database provides direct clinical benefits to patients, because it enables better clinical audit and NHS service development and evaluation.

How does it work?

Information from C&I NHS clinical records is fed into a research database via a system that removes any information which could lead to identification.  Approved researchers may then use this data to carry out research which might include (for example) looking at the causes and consequences of diseases and response to treatment. 

If you would like any additional information regarding the C&I Research Database, or if you would rather not have your records in the database, please email the C&I Research Database administrator on researchdatabase@candi.nhs.uk

Frequently Asked Questions (FAQs)

What type of research takes place using the Research Database?

The studies are nearly all population research (e.g. large surveys) or service evaluation research (e.g. measuring outcomes for people who have used a service).

They look at groups of people in the Trust and their outcomes. Examples include large scale research of people using crisis teams and studies of patterns of cognitive decline in people with dementia.

Can I opt out?

Yes you can opt out of your anonymised records being in the Research Database by emailing us at: researchdatabase@candi.nhs.uk; or you can ask your clinician to email us if you prefer, but you will need to give them your permission.

Please remember that research is essential to improving the treatment of mental health problems, and that the computer removes or covers up any information that can identify you.

Who can access the database for research?

Only researchers approved by the Trust. Researchers from approved partners must apply for a C&I account. Most researchers are from C&I and our partner UCL. There must be a C&I researcher or clinician included as part of the team for each study. Researchers’ approvals are time limited - usually expiring after a year.

What about confidentiality?

All database researchers must access the Research Database via the C&I network which is within the NHS firewall. Researchers are trained so they know the law to ensure information is kept safely. They are also trained to keep anonymised individual’s data confidential. This means that they must adhere to confidentiality principles and have appropriate NHS Information Governance training.

Does the database have ethical approval?

Yes. The Research Database has received ethical approval from an independent (non-Trust) research ethics committee, as a safe, secure and confidential information source for research.

We will continue to seek the permission of independent organisations outside the Trust to assess our arrangements. This ensures that information and confidentiality are always protected.

Can researchers identify individuals in the database?

The Research Database removes personal identifiers such as name, NHS number and address from the records. We do not approve studies where there is a risk that the researcher might identify an individual by mistake; for instance, if they were studying a very rare condition or outcome. We approve research in groups of people, not individuals.

How is the C&I Research Database created?

The Research Database is created for C&I by collaborators at South London and the Maudsley (SLaM) NHS Foundation Trust. Their technicians have years of experience in creating their own anonymised database from electronic mental health records.  We have a legal agreement with SLaM NHS Trust which is GDPR and data protection compliant. This means that Research Database fulfils all requirements of the law.

The C&I data are processed securely by technical staff at SLaM NHS Trust to create our anonymised C&I Research Database. This research database can then only be accessed from C&I network. Researchers at SLaM and other NHS organisations cannot access the C&I Research Database directly. If they wish to work on the database, they must apply for a C&I account and gain approval to come to C&I and work with us on research.

Can individual data or records be taken out of the C&I Research Database by researchers?

No. Researchers must analyse all data within the C&I NHS Trust network. They cannot transfer the data elsewhere. We have dedicated computers in the C&I research department for this purpose. The researchers can only publish findings in results tables showing grouped data and results. No individual data can be published or presented.

Are service users involved in the C&I Research Database?

Yes. We have had four lay representatives involved over the lifespan of the C&I Research Database.  We have currently two lay representatives on the oversight committee for the database. All applications for studies wanting to use the C&I Research Database are reviewed by a lay representative and a clinical representative.

We have presented the database to the C&I service researcher forum at UCL, to Camden service user forum CBUG and we have recently held a data science service user workshop with our colleagues at McPin. www.mcpin.org

Do industry or commercial companies use the database?

No. We have not had any such applications. If this changes we will consult with the oversight committee and consult with C&I service users, clinicians and researchers.

Does the use of the Database comply with EU and UK Law?

Yes it does. All efforts have been made to ensure that the use of the C&I Research Database complies with the Data Protection Act 2018 (DPA) as well as the principles of the General Data Protection Regulation (GDPR).


 

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