How your information is managed under the General Data Protection Regulation (GDPR)
Proton beam therapy (PBT) has been available abroad for eligible NHS patients since April 2008. In autumn 2018, the proton beam therapy centre at The Christie, providing high-energy proton beam therapy in the UK. PBT enables a dose of high-energy protons to be precisely targeted at a tumour, reducing the damage to surrounding healthy tissues and vital organs.
To ensure the treatment is effective and the correct choice for certain types of cancer or patient cohort, the recording and analysis of the effects of treatment are essential. To allow us to do this, important information about proton beam therapy patients is being collected by the proton clinical outcomes unit (PCOU) to help to provide better care for current and future patients.
The proton clinical outcomes unit, based in the proton beam therapy centre at The Christie (working in partnership with NHS England), are a dedicated team whose role is to capture, analyse and publish clinical outcome data for patients who have undergone PBT. The team is clinician-led, and includes a statistician, data analyst, and an outcomes support officer as well as having support from clinical fellows. The work of the PCOU is generated and prioritised by a monthly proton education and research committee who will review and grant approval for data access requests.
Patients monitored by the PCOU include patients treated with proton beam therapy both at The Christie and NHS patients treated overseas (historic, current and future). In 2019, historic overseas programme data was migrated from St James's Hospital in Leeds into The Christie systems, and overseas programme data collection will be the responsibility of the PCOU going forward.
As PBT is a new treatment modality, there are numerous unexplored research questions. The use and analysis of routine data from the whole PBT patient population, as opposed to selected sub-sets of the population (as is the case in clinical trials), ensures that the results of the data can be applicable to everyone, including those currently poorly represented in trials (e.g. the very young and those with severe co-morbidities). We aim to extend real world data analytics to the complex, multi-dimensional clinical and imaging data collected every day during routine PBT treatment in the NHS.
The General Data Protection Regulation (GDPR) governs the processing of personal data held on computer systems and in all other formats. It restricts how we can use an individual’s data, and consists of 6 privacy principles that must be applied when processing such data. All data will be processed confidentially in accordance with GDPR and anonymised if sent externally.
For more information on what data is collected, how your data is used and your rights under the Data Protection Laws, please see our privacy notice.
If you have any questions about the work of the proton clinical outcomes unit, or to opt out, please email firstname.lastname@example.org