Service users
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 to improve our health services so that you can be assured of the most advanced and best quality care. The 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 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.
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?
You can opt out of your anonymised records being in the Research Database by:
- emailing us at: nlft.researchdatabase@nhs.net
- mailing us at: Research Database Administrator c/o Noclor Research Office 1st Floor, JML House, Regis Road, London, NW5 3EG
- or you can ask your clinician to email us if you prefer, but you will need to give them your permission
Opting out will not affect the care that you receive.
Who can access the Research Database?
The Research Database is only available to researchers who have a contract with the Trust. These researchers might work in collaboration with other organisations like universities, charities, or other NHS Trusts (‘not-for-profit’). The information in the Research Database is protected by strict Trust information security, and cannot be accessed or taken outside the Trust in any form.
Who do you share my data with?
In order to carry out data linkages, we sometimes need to share information such as your NHS number, name, and date of birth, with trusted third parties, such as NHS England.
Data linkage with external organisations is legally permitted by the Health Research Authority under Section 251 of the NHS Act 2006. This approval enables temporary use of identifiers for accurate linkage. This is always done in a secure environment. Once records have been linked, all identifiable information is destroyed and the data are fully anonymised prior to it being used for any research.
What about confidentiality?
All Research Database researchers must access the Research Database via the Trust 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 Research 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 Research 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 was the Research Database created?
The Research Database was created for the Trust with 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 the Research Database fulfils all requirements of the law.
Data are processed securely by technical staff at SLaM NHS Trust to create our anonymised Research Database. This research database can then only be accessed from Trust network. Researchers at SLaM and other NHS organisations cannot access the Research Database directly. If they wish to work on the Research Database, they must apply for and gain approval to come to North London NHS Foundation Trust and work with us on research.
Can individual data or records be taken out of the Research Database by researchers?
No. Researchers must analyse all data within the Trust network. They cannot transfer the data elsewhere. We have dedicated computers in the 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 Research Database?
Yes. We have had several lay representatives involved over the lifespan of the Research Database. We currently have several lay representatives on the oversight committee for the Research Database, including a lay representative chair. All applications for studies wanting to use the Research Database are always reviewed by a lay representative and a clinical representative. We also have a Data Science Patient and Public Involvement (PPI) group, based at University College London, who comment on and contribute to the design of studies using the Research Database.
We have presented the Research Database to the service user research forum at UCL.
Do industry or commercial companies use the Research Database?
No. We have not had any such applications. If this changes we will consult with the oversight committee and consult with service users, clinicians and researchers.
Does the use of the Research Database comply with EU and UK Law?
Yes it does. All efforts have been made to ensure that the use of the Research Database complies with the Data Protection Act 2018 (DPA) as well as the principles of the UK General Data Protection Regulation (UK GDPR).
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 Research Database provides direct clinical benefits to patients, because it enables better clinical audit and NHS service development and evaluation.
