Through our close partnership, DataLoch and Edinburgh Cancer Informatics ensure cancer data enables vital contributions to a range of research and innovation priorities.
What is Edinburgh Cancer Informatics?
Based at the Western General Hospital, the Edinburgh Cancer Informatics team consists of skilled clinicians, analysts, researchers and data managers. It brings together the NHS, academia, and industry to directly enhance the frontline delivery of NHS cancer care through more meaningful use of health data.
Edinburgh Cancer Informatics supports the NHS in analysing large data from hospital datasets such as the South East Scotland Cancer Database, the cancer registry and the chemotherapy database. These databases encompass decades of vital information on diagnoses, treatments and patient outcomes.
Discover more about these data
Expert knowledge in cancer informatics is crucial for managing, understanding, and analysing these data. This expertise ensures the development of meaningful insights and patient-care improvements.
Explore Edinburgh Cancer Informatics projects
How does DataLoch’s collaboration with Edinburgh Cancer Informatics deliver public good?
Firstly, DataLoch enables access to extracts of everyday health data from NHS Lothian hospital and GP sources that can be linked to the South East Scotland Cancer Database and other datasets. Therefore, de-identified extracts of current health service data – including GP appointments and laboratory test results – can be integrated with the cancer-specific database, offering broader insights into the patient journey. Furthermore, longer-term follow-up of patient outcomes is a critical part of evaluating any medical treatment – this is only truly possible through data from outpatient departments and GPs, as well as from hospital records.
Secondly, alongside the above work for the Edinburgh Cancer Informatics team to analyse data, the partnership offers a route for trusted researchers to securely access data extracts for approved projects through a Secure Data Environment. This allows researchers with approved projects to safely access everyday health data and develop insights into treatments and outcomes around cancer and other conditions.
Thirdly, the above is underpinned by DataLoch’s robust governance process which includes an Independent Review pathway. Projects are reviewed by an NHS Lothian Caldicott authority to evaluate privacy risks and suitability; a panel of experts focus on any ethical considerations; and our Public Reference Group assess a project’s public value. This approach ensures that the right people are accessing the right data for the right reasons. The DataLoch and Edinburgh Cancer Informatics teams also support disclosure control checks on Secure Data Environment outputs at the end of the project prior to publication. Together, we ensure that the anonymised aggregated output complies with NHS data policies and patient-identification risks are minimised.
Examples of some of our supported projects
A pilot prehabilitation project led by Dr Iain Philips aimed to explore the impact of offering supportive interventions in the period between an initial scan suggesting lung cancer and clinical confirmation through further tests. This supportive approach was demonstrated as being viable, but further work is needed to understand impacts on hospital admissions and survival rates.
Read about the prehabilitation pilot
An early Triple Negative breast cancer study supported by the company Roche, which was a partnership with the DATA-CAN network (a network of NHS trusts, charities, academia, and industry), to better understand the Scottish and Leeds population affected by this aggressive form of cancer.
Read the brief project results overview
A study looking at describing and better understanding the Scottish population affected by high-risk early breast cancer. This work – supported by Eli Lilly – describes demographic, clinical, and outcome characteristics of Scottish patients, adding to the evidence to support policy decisions around cancer treatments resulting in improved patient care.
Access a summary of this early breast cancer study
Integrating data from different sources improves the possibilities for research, but it also brings challenges due to differences in recording systems or naming conventions. To address this issue, DataLoch has explored the possibilities of the OMOP Common Data Model. We have supported Edinburgh Cancer Informatics and trusted international partners to take our initial explorations further by comparing different cancer types (breast, colon, lung, liver, prostate, head and neck, pancreatic, oesophagus and stomach) and their respective survival rates between 16 different hospitals.
Explore summary details of this Europe-wide collaboration
Accessing the DataLoch Cancer service
If you are interested in working with our collaborative service to deliver further cancer insights, please Connect with Us.
