Which applicable guidance’s and regulations allow us to provide THIN with our Practice’s Data in this way?
a) General Data Protection Regulation (GDPR)
The European Union's new General Data Protection Regulation that came into effect in May 2018, demands that stored data on people in the EU undergo either an anonymization or a pseudonymisation process
Article 9.2 of GDPR states:
processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.
b) Department of Health
The Department of Health’s South East Multicentre Research Ethical Committee has approved the THIN data collection scheme and THIN is certified by the Information Commissioner's Office
Why do you collect data in an anonymised way where as other data collectors do this in a pseudonymised way?
THIN made a conscientious decision in its inception to collect data in an anonymised format, to protect the rights of:
The decision to anonymise the data ensured that no potential parties involved in providing data could be identified and therefore the data cannot be linked to any other information that is publicly available today.
By ensuring the above, THIN has created a medium whereby its data can be successfully utilised in a safe manner for the betterment of public health, medical research and patient outcomes
Who else collects similar primary healthcare data in the UK today?
Clinical Practice Research Datalink (a subsidiary of the MHRA), also known as CPRD, collect data in a pseudonymised format from GP Practices for the purpose of Public Health & Medical Research
How do I know the data we are providing is having a positive impact on the UK healthcare landscape?
As of July 2018, Over 600 medical research publications a have been made utilising data from THIN by a number of research institutions. Below are a couple of examples of recent publications utilising THIN data
a) Risk of stroke and transient ischaemic attack in patients with a diagnosis of resolved atrial fibrillation: retrospective cohort studies
b) Polycystic ovary syndrome, androgen excess, and the risk of non-alcoholic fatty liver disease in women: A longitudinal study based on United Kingdom primary care database