With every year more people are living for longer with and beyond cancer. This presents a societal challenge as we look to deliver care that maximises the quality of life with and beyond cancer. Many of the growing cohort of cancer survivors report significant unmet whilst there is incomplete understanding of long term service needs, consequences of treatment, and appropriateness of aftercare services.
This project is funded by Macmillan Cancer Support to develop a clearer picture of what happens to people leaving with and beyond cancer and the costs involved. We will study non-identifiable data that is securely linked from GP, community and hospital records. The linkage enables a better view of patient’s health before the cancer diagnosis, the impact of cancer treatment of subsequent health and wellbeing, and the associated costs. In addition, we will collect patient reported outcomes through the use of PROMS.
The aim is to allow patients, through such research, to benefit from the information within routinely collected data. Patient involvement is therefore central to guiding the success of the project, which has patient representation on the investigator team. The project has sought views from patient groups including the Cancer Research UK Leeds Centre’s Public and Patient Involvement in Research Group that advised:
“We all think that the ethical considerations have been dealt with very properly and that this is a good use of existing data.”
The first stage of the project links and analyses non-identifiable data from GP, community and hospital records. This stage has been successfully reviewed by the NHS Research Ethics Council and approved by the NHS Health Research Authority Approvals (IRAS project ID 188345 REC reference 16/NE/0155). This was informed by local review by the data sources and the IRC Information Security Management System.
The non-identifiable data for the first stage of the project comes from two electronic health data sources:
– Patient hospital records and financial data held at the Leeds Teaching Hospitals NHS Trust to support patient care. This is significantly more detailed than national registry data.
– GP and community records data that is opted in to ResearchOne, a non-identifiable research database held by The Phoenix Partnership (TPP). TPP maintain electronic health records for over 5,000 UK healthcare organisations.
The data is encrypted and transferred to the Integrated Research Campus (IRC) – a secure research environment within the MRC Medical Bioinformatics Centre at the Leeds Institute of Data Analytics at University of Leeds. A third discrete organisation, the IRC Data Services Team, will link the data using digests (rather than identifiers) created using a process called OpenPseudonymiser. Data will remain securely in the IRC with approved access by the research team.
The data flow protocol (IRAS project ID 188345 REC reference 16/NE/0155) may be adapted for use by other projects.
The IRC Information Security Management System supports the project’s data handling approach.
The project, funded by Macmillan Cancer Support, is a multidisciplinary partnership including clinicians, health economists, data scientists, biostatisticians and – centrally – patients.