Pioneering simpler access to Scotland’s public data
Our CEO Professor Roger Halliday talks about the benefits of the Researcher Access Service, and how researchers can navigate it.
Roger Halliday
09 Dec 2024
Case study: PROSECCA
Improving radiotherapy in PROState cancer using EleCtronic population-based healthCAre data
Overview
Out of all cancers, prostate cancer is responsible for the second most deaths in the UK. One in eight men are diagnosed with prostate cancer, with 12,000 people dying from it every year.
Some of these deaths occur because diagnostic tests under-estimate how aggressive or advanced the cancer is, and subsequent treatment is insufficient to clear all the disease.
PROSECCA proposed the use of advanced computing techniques to analyse the healthcare records from over 10,000 prostate cancer patients who underwent radiotherapy in the treatment of their cancer in Scotland. Through meticulous analysis of the data from each patient’s unique healthcare history, the team seeks to discover new relationships between a patient’s medical history and how well they respond to radiotherapy in treating their cancer.
They hope to make it easier to establish which factors in a patient’s complex healthcare records indicate that they may have a poor response to treatment or an increased risk of side effects from radiation. In doing so, they believe it will be possible to identify a patient’s response to particular treatment sooner, allowing healthcare professionals to adapt their approach and achieve better outcomes.
By identifying these important factors, they aim to improve radiotherapy treatment for prostate cancer patients in the future.
Who was involved?
The three-year project was led by Professor William Nailon at University of Edinburgh with co-investigators and partners at Public Health Scotland (PHS), Prostate Cancer UK, Scottish Government and NHS Lothian. The team involved over 50 clinicians, radiographers and physicists.
What data is being used?
The PROSECCA study involves the analysis of healthcare information from two sources. The first is radiotherapy data, which is stored locally within each cancer centre in Scotland. The second is healthcare record data, which is requested through Public Health Scotland (PHS) via an NHS Scotland Public Benefit and Privacy Panel for Health and Social Care (HSC-PBPP) application.
Once they have access to the data, the team will organise the raw data into a suitable format for large scale computing, which will make implementation of the machine learning algorithms more straightforward.
This will also help to make the PROSECCA dataset a valuable resource, as it could be reusable by other researchers.
Getting approvals to access the datasets was lengthy, taking one year for approvals and a further six months for data preparation.
Research Data Scotland’s impact
Research Data Scotland (RDS) exists to make it faster and simpler for researchers to access public sector data. We want to make the cycles of innovations faster – we are all too aware that 18 months of delay in accessing data, in the case of PROSECCA, could have led to thousands of lives potentially saved.
Through the Researcher Access Service, we enable streamlined access to data for research in the public benefit, reducing the time and resources required to undertake projects like PROSECCA and speeding up research. Launched in April 2024, the service initially enables access to nine of Public Health Scotland’s most frequently requested datasets through a streamlined pathway, where previously complex approvals and information governance processes are standardised using the Five Safes framework.
We are also working with Scotland's National and four Regional Safe Havens to simplify and streamline common systems, processes and services, making it easier for researchers to access data which falls outside of the Researcher Access Service. For projects like PROSECCA, which required researchers to obtain individual approvals through several local health boards, our work to federate processes will further improve the data access journey. Find out more about our work with the Scottish Safe Haven Network.
What did they find, and what are the next steps?
PROSECCA is the first study of its kind to combine radiotherapy-specific data with digital healthcare data and primary healthcare records at this large scale.
The team were able to show it is possible to predict relatively low-grade toxicity in people receiving radiotherapy using the information in the images, which is a routine procedure as part of their radiotherapy treatment.
In their ongoing work, the team hope to build a clinical decision support tool, or an app, that can be used in the clinic by oncologists to determine the probability of factors linked to treatment such as biochemical control and toxicity, which could impact overall survival and quality of life.
How could this research help inform policies and improve lives?
One in eight men are diagnosed with prostate cancer, making it the most common cancer in the UK, with 12,000 people dying from it every year. Any non-invasive tool that can help tailor treatment to see how patients respond to radiotherapy would be a welcome addition to help outcomes and, hopefully, save lives.
Find out more
PROSECCA is being undertaken using computing resources from EPCC at the University of Edinburgh. Learn more about the project on the EPCC website.
Image credit: Prostate cancer cells. Annie Cavanagh. Source: Wellcome Collection.
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