We take your confidentiality and privacy rights very seriously. This notice explains how we collect, process, transfer and store your health data. It forms part of our duty of accountability and transparency under the General Data Protection Regulation (GDPR) and Data Protection Act (2018) (DPA).
The Chief-PD study requires the linkage of personal (health) data collected during the study (study data) to routinely collected NHS health data (routine data). This will enable the study team at the University of Bristol to determine which of the study participants have had a hospital admission for treatment in the 12 months after joining the study. Linkage of study data to routine data is also required for a health economics analysis, which will show how cost effective each treatment strategy is for the NHS. The University of Bristol is both the Data Controller and Data Processor for this study, which means that the University is responsible for determining the purpose and means by which the personal data of participants is used and for analysing the data and keeping it secure.
Patients with Parkinson’s disease will be asked for consent to take part in the Chief-PD study. This will include consent for their identifiable data (i.e. NHS Number and Date of Birth) to be sent to NHS England. Patients who have consented to participate in the study will have their study data (including on falls and related factors, disease and other health measures and quality of life and healthcare use) collected by the University of Bristol.
In order to link the study data to the routine health data held by NHS England, the University of Bristol will send study participant’s identifiable data and a participant ID number to NHS England. NHS England will then link these identifiers to routinely collected Hospital Episode Statistics (HES) data (i.e. emergency care, outpatients and hospital admissions), remove the identifiable data and return the participant ID number and the hospital episode data to the University of Bristol for analysis.
The Chief-PD study team will undertake some data cleaning before undertaking data analysis. The analysis will allow the study team to determine the frequency with which study participants are admitted to hospital for treatment. The study team will analyse the data to determine the cost effectiveness of the treatments provided to the two groups of participants. All data analysis and reporting of results will be based on non-identifiable data.
Data Retention
The non-identifiable linked data provided by NHS England on episodes of hospital care is held securely on University of Bristol servers until December 2026 when it will be securely destroyed. The University of Bristol will keep other identifiable information about study participants for 15 years after the study has finished.
General Data Protection Regulation (GDPR) Legal Basis for Processing
Your data is being processed under General Data Protection Regulation (GDPR) Article 6(1)(e), processing for a task in the public interest, and Article 9(2)(j), processing for scientific research purposes.
Rights of the Individual
The GDPR provides rights for individuals which we need to make you aware of; the right to be informed, the right of access, the right to rectification, the right to erasure, the right to restrict processing, the right to data portability, the right to object to processing and rights in relation to automated decision making and profiling. There is no automated decision making (making a decision solely by automated means without any human involvement) or profiling (automated processing of personal data to evaluate certain things about an individual) involved in this study. The rights available to you depend on the reasons why we are processing your data. In certain circumstances, you have the right to request the restriction of the processing of your personal data. This means that you can limit the way that an organisation involved in this study uses your data. You may contest the accuracy of your personal data, you may feel that your data has been unlawfully processed, you may wish for an organisation to keep your data for a longer period in relation to a legal claim, or you may object to the articles under which an organisation has processed your data.
These requests can be made in writing or verbally. You can contact the Trial Manager via email at chief-pd@bristol.ac.uk or via telephone 0117 428 3113 / 0117 428 3111.
Consent
We will ask for your consent before using your data for the study. We’ll always explain to you what’s going to happen and give you the choice to go ahead.
You consent has to be:
Voluntary – it’s your decision.
Informed – we have to give you all the information on this study.
You give consent by signing a consent form.
If you wish to withdraw your consent for data to be processed in this study you can do so at any time, without giving a reason, by contacting the Trial Manager via email at chief-pd@bristol.ac.uk or via telephone 0117 428 3113 / 0117 428 3111.
Concerns and Complaints
If you have concerns about how an organisation has handled your information, you have the right to lodge a complaint to the Information Commissioner’s Office. Their helpline number is 0303 123 1113 or website: https://ico.org.uk/make-a-complaint/
You can also contact the Trial Manager or the relevant Data Protection Officer in the first instance.
If you wish, you can contact the Data Protection Officer at the University of Bristol: data-protection@bristol.ac.uk