By Helen Jenkinson, Consultant Paediatric Oncologist in the Retinoblastoma Service at Birmingham Children’s Hospital and Paul Davies, Head of Registration at NCRAS West Midlands and South Central, Public Health England…

Every year, the retinoblastoma (Rb) teams from Birmingham and London meet with NHS commissioners. At the meeting clinicians, nurses, commissioners and analysts discuss differences in referral, diagnosis and treatment at the two centres. Understanding these differences is vital to improving the services and care provided to children with Rb in the UK.

Making comparisons between the centres can be frustrating and time consuming as both centres collect and analyse their results in slightly different ways. After one such meeting, we agreed how much better it would be if the data was collected centrally and from that initial idea an exciting and ground-breaking project emerged.

In 2015, with the support of a generous grant from CHECT, we started to design a unique national Rb register in partnership with Public Health England’s National Cancer Registry which collects information on all cancers treated in England. The Rb register is set to replace existing Rb data systems used in the UK; improving and standardising the way we collect data.

The register will use the full range of data already collected by the cancer registry and Rb clinicians will be able to audit and enrich their patients’ cancer registration records with data specific to the diagnosis and treatment of Rb. The resulting gains in consistency, completeness and data quality will make reporting to commissioners much easier.

Benefits of the new register

This approach to develop a register within a well-established, world-class cancer registration service will mean that the information will be entered and stored securely, undergo careful quality control for accuracy and will still be available in decades to come – providing lifelong monitoring of the incidence of second primary tumours and other potential late effects.
There are numerous benefits of this approach not only to patients with Rb but those with other childhood cancers or rare diseases too.

These include:

1. Clinical Audit

To be able to better assess the quality of Rb services being provided, which could include the effectiveness of treatment plans and the short and longer term health and wellbeing of patients after they have finished treatment.

2. Patient Care planning

To provide treatment timelines, end of treatment summaries and individualised care plans which help patients to understand their diagnosis, the treatment they have received and the potential problems they may encounter in the future, along with advice on how to stay healthy as they get older.

3. Research

Access to anonymous data will allow research teams to understand more about the causes of retinoblastoma and investigate new and innovative approaches to treating both the disease and its late effects.

The Rb clinical teams and representatives from NCRAS and CHECT met for an initial workshop in 2015 to discuss and debate what information should be collected on each patient. As we expected, we started off with a very long list of information and this has gradually been refined and revised to make sure that the data collected is necessary, appropriate and manageable for the busy clinicians who will be entering it into the database week by week.

Once the final list had been approved, it was sent to the NCRAS IT development unit in Cambridge for the team there to create the platform in which it will be stored and the clinical portal through which the clinical teams will be able to add new data and review the patients under their care. Each Rb centre will only be able to see information on patients registered at their own centre although anonymised data will be available to clinicians on all patients registered in the database on request.

The clinical portal has now been developed and is currently undergoing testing by the clinical teams to iron out any potential problems before the system goes “live” later this year.

The National Cancer Registry has the government’s permission to collect and use sensitive personal data on cancer patients without consent, for medical purposes and in the public interest. If you want to find out what information the cancer registry may hold on you or your child, please contact FOI@phe.gov.uk . Anyone can opt out of cancer registration without it affecting the care they receive from the NHS. You can find out more about the cancer registry at www.ndrs.nhs.uk.

This article first appeared in the Autumn/Winter 2018 edition of our InFocus newsletter. You can download the full newsletter here.