Pukka-j will be working with the world class St. James’s Institute of Oncology Leeds on the development of the first paediatric radiotherapy national database. Pukka-j’s software development team will work with St. James’s to create a system that stores paediatric radiotherapy text and DICOM image data for The Leeds Teaching Hospitals (LTHT) site, designing the system so that it can be replicated on other NHS sites outside the LTHT firewall.
The project, sponsored by the Yorkshire Cancer Network, has the support and approval from the UK Children’s Cancer and Leukaemia Group (CCLG) and the Radiotherapy and Late Effects Groups. Primarily, it will enable clinicians to share ‘pseudonymised’ data for research, and in particular, to relate late effects (as far as twenty years after) to the treatments given. Once established, the database will help clinicians to collaborate on plans for treatment of current patients. Radiotherapy in the UK is a specialised service, which is centralised into regional centres serving populations of roughly two million. Only CCLG registered centres treat children. For a typical centre that sees 3,000 new patients a year, only 60 would be children.
In the UK approximately one in a thousand young adults are survivors of childhood cancer. Treating children presents many challenges, and high overall cure rates and long-life expectancy demand attention to the toxicities that treatments may leave in their wake. Childhood cancer survivors ‘cured’ of their cancer are at risk of developing treatment related physical, psychological and social late effects. Long-term follow-up and therefore long-term record keeping is crucial.
Andy Shaw, Clinical System Project Manager at the Institute comments:
“There is a need for a database that records children’s radiotherapy treatment and it must be robust and designed to last. Currently, there is no exclusive paediatric or national system. To create one is a new direction in data use, and replies on selecting out data from Trusts, which is held in the mixed adult and paediatric radiotherapy databases that they use. The intention of the project is to pilot the system that can house text and DICOM image data, starting with the paediatric data at St. James’s Institute of Oncology and then adding those from other Trusts in progressive fashion.”
The main objectives of the project are to design the system so that data can be input by users inside and outside the LTHT using trusted connections with suitable security provisions. Once the system is implemented, it will be possible for authorised personnel within LTHT with a legitimate clinical or administrative reason, to view the patient data. Also built into the design will be the facility for the future development of non-LTHT clinicians, with a legitimate reason, to view patient data.
Andy Shaw continues,
“We are pleased to working on this partnership development project with Pukka-j. Their team demonstrates a good track record of providing quality software services for Radiotherapy, Proton Beam Therapy, Nuclear Medicine and PET/CT, from the days when our services were run from Cookridge Hospital to the new services at the Institute”
St. James’s Institute of Oncology is an outstanding facility that delivers unparalleled levels of cancer care and treatment to the people of Yorkshire. It is not only the largest cancer centre in the UK, but also the largest in Europe. The facility provides a focus for treatment, teaching, research and development. Some key researchers and practitioners in the field of cancer across the UK provide high quality cancer care by developing and maximising leading-edge science, research and technology.