Dr Rudolf Cardinal
Click to hear Rudolf explain how the CRIS database works

Research within CPFT

Research is critical to the long-term success of CPFT. Together with our research partners, we undertake research that contributes to the development of medical knowledge and supports innovation in mental health services. Please explore this section of the web site to learn more about research in CPFT.

What is the CPFT research database?

It is a database of anonymised medical records. CPFT’s electronic clinical records are put through a software tool called CRIS (Clinical Record Interactive Search), which removes information that might identify a patient.

 

 

 

 

 

 

 

 

 

 

 

 

 

What will the database help to achieve?

The database will be invaluable as researchers carry out their work into what causes conditions such as dementia, and which treatments are best for dementia and other mental health conditions.

How is the Research Database used?

The database allows research using this anonymous information. For example, researchers might use the database to see which treatments help the most in schizophrenia, or how often patients get side effects such as weight gain from a particular medicine, or how well different kinds of psychological therapy work for different conditions. In this kind of research, the researchers do not know the identity of any patient.

The database speeds up research, and makes research possible that would otherwise be impossible. It also allows research to be conducted anonymously when in years gone by the same research would have needed research clinicians to see paper case notes.

Obviously, for some kinds of research, the researchers and patients must meet face to face. The database can also help this process. Researchers can search the anonymous records for patients that might be suitable for their study, without knowing their identity. If and only if the service user gives their specific permission for their details to be released to the researchers, a special process (outside the database) allows this to happen.

Here, the database helps people participate in research. It means that when people get asked about research studies, those studies are very likely to be relevant to them. It will help researchers to recruit participants faster and to find the answers to important medical questions faster.

Is the database ethical? Who approved it?

  • The database was developed with extensive involvement from patient/service user representatives, and is overseen by a Research Database Oversight Committee that includes patients and doctors.
  • The database has been approved by an independent NHS Research Ethics Committee specialising in databases.
  • It has also been approved by CPFT’s Research and Development department and its Board of Directors.
  • The database uses the CRIS system developed by the South London and Maudsley NHS Trust (SLaM) and the Institute of Psychiatry. SLaM’s equivalent database has been running since about 2008. The UK National Information Governance Board (replaced in 2013 by the Care Quality Commission) hailed this system as a model for improving research while ensuring patient anonymity.
 

How secure is the information?

  • The overriding principle is: nobody except the care-giving team can see patient-identifiable information without the patient’s specific consent.
  • Patient-identifiable information is removed before information is stored in the Research Database.
  • The database is held within CPFT’s secure computing environment, within the NHS. No information ever leaves this environment except summary information about large groups of people, from which no individual could be identified.
  • All researchers using the database must be working within CPFT – either as clinicians, or as affiliated researchers approved by CPFT to work within CPFT. For example, our researchers include psychiatrists and psychologists working for CPFT, the University of Cambridge, or both.
  • All research projects using the database must be approved by CPFT’s Research Database Oversight Committee. Projects need to meet the highest of standards for access to the database to be permitted.
  • All projects involving contact with patients must also have their own independent approval from an NHS Research Ethics Committee.
  • Access to anonymous data for researchers is strictly controlled.
  • Access to patients by researchers is even more strictly controlled (see below).
 

How can I choose to be contacted about research?

Patients decide on a colour flag, which determines whether researchers may contact them, summarised below. If they’ve not yet expressed a preference, the “yellow” route is taken.


If you want to choose or change your traffic-light preference, talk to your clinician or care coordinator, or e-mail research.database@cpft.nhs.uk, or write to CPFT FREEPOST RESEARCH DATABASE MANAGER.

Is it an opt-in or an opt-out system?

1. The anonymous database is opt-out. If you have had information about you recorded electronically at CPFT since 2005, your information will have contributed to this database, but with identifying information (names, addresses, exact dates of birth, NHS and CPFT numbers, names of family members, and so on) removed.

Thank you! If you are one of these people, you are anonymously helping to save lives.

If you want to opt out, talk to your clinician or care coordinator, or e-mail research.database@cpft.nhs.uk, or write to FREEPOST RESEARCH DATABASE MANAGER.

2. Having researchers contact you, and having them see your identifiable medical records, is always opt-in. Researchers outside your clinical care-giving team will never be allowed to contact you (or even know who you are) via the database unless you have given your specific permission.

How many patient details are in the database?

As of early 2014, the database contains anonymised information derived from the records of about 150,000 people.

How is this different from the national "care.data" programme? 

The care.data programme is a national, centralized NHS information technology programme. GPs will be obliged to send parts of all their patients’ records, except those who have opted out, to the Health and Social Care Information Centre (HSCIC). This information will then be processed to remove identifiable information. The information will then be made available to approved organisations for approved research.

In contrast, information from the CPFT Research Database comes from CPFT’s own records, and does not leave CPFT.

Will pharmaceutical or insurance companies be able to access the database?

No.

Sometimes pharmaceutical companies conduct clinical trials in CPFT and other parts of the NHS. These trials are very strictly regulated by the NHS. So the pharmaceutical companies know which parts of the NHS are best to work with for a particular trial, they sometimes ask CPFT: “How many patients in your service have disease X?” CPFT sometimes uses information from the Research Database to answer these questions. CPFT’s answer is a single number, such as “2,400” or “Fewer than 10”. The companies never get to see or use the Research Database. If the Database is subsequently used to find patients anonymously who might be suitable for research, the Database is again used by CPFT researchers, not by external companies.

Are the details in the CPFT database given or sold to third parties?

No. 

What future developments might be there?

It would help research if CPFT’s computers could link in information from other sources as the anonymisation takes place – for example, from the Hospital Episode Statistics, which contain centrally collected information summarizing the reasons that people attend hospitals. Why? Well, for example, because at present we know that patients in CPFT with some diseases die younger than patients with other diseases – but we don’t know what they die of, because that information is recorded elsewhere and we don’t have access to it. Knowing this kind of information would help us to know what to do to help people live longer. Anonymity would still be preserved.

It would also help to be able to conduct studies across the five-Trust D-CRIS network (see below) using anonymous information, because when you study more people, you can discover more things and look at rarer diseases.

However, at present we do not have approval to do either of these things. We might ask for this permission in the future.

How much has this cost?

About £350,000 – of which £300,000 has come from the UK National Institute of Health Research (part of the NHS and funded by the Department of Health) and about £50,000 from CPFT.

What is the D-CRIS project?

The D-CRIS project is a research collaboration between five NHS mental health Trusts with their partner universities:

  • Cambridgeshire and Peterborough NHS Foundation Trust (with the University of Cambridge and the NIHR Cambridge Biomedical Research Centre)
  • Camden and Islington NHS Foundation Trust (with University College London)
  • Oxford Health NHS Foundation Trust (with the University of Oxford)
  • South London and Maudsley NHS Foundation Trust (with the Institute of Psychiatry, King’s College London), hosting the NIHR Mental Health Biomedical Research Centre and Dementia Unit
  • West London Mental Health NHS Trust (with Imperial College London)

It is funded by the NIHR. Its central objective is to create a world-leading resource for collaborative dementia research.

As of 2014, member Trusts have their own separate instances of the CRIS system, which are not linked together, and research studies are underway.

How can I find out more?

For further information please take a look at the:

  • patient information leaflet
  • decision making form, and
  • information for clinicians and researchers

which can be found at the bottom of this page.

 

 

The page was last updated on 22 May 2017 by jonathan.lewis.

Cambridgeshire and Peterborough NHS Foundation Trust
Elizabeth House, Fulbourn Hospital
Cambridge, CB21 5EF

T 01223 726789 (open 8:30am to 5pm)
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