Patient data is kept safe and secure within each of our partnered data providers and Trusted Research Environments. DefinitionsWhat are data controllers / data custodians?A Controller is an organisation which determines the purposes and means of personal data processing, even if the processing does not occur in the organisation. The Controller exercises overall control of the processing and is ultimately in charge of, and responsible for, processing.In health data research, we sometimes refer to data controllers and custodians by the more general term 'data providers'.Useful linksUnderstanding Patient DataWho decides how patient data is accessed?Patient data saves lives: The bigger pictureOtherCurrent thinking on Controllers and Processors in health research - Medical Research CouncilControllers and personal health data in health and care research - NHS Health Research AuthorityRoles and responsibilities - NHS Health Research AuthorityWhat are Trusted Research Environments (TREs)?Trusted Research Environments (TRES) are highly secure computing environments providing remote access to health data for approved researchers. We use them to carry out research across various scientific domains, to save and improve lives. Image Source: Health Data Research UK Find out more about TREs Find out more about the 5 'safe' principlesOur data partnersClick on the descriptions below to learn more about our partnered data providers (data controllers) and TRE's.Representatives from each of our four data partners participated in our Introducing Inflammation and Immunity webinar event, providing an opportunity for audience members to ask questions on what to expect when engaging with them. Watch the recording to find out more.Watch our webinarHow is data kept safe?Each of our partners has their own governance, safety and security procedures. Where possible, we have included links to where each our partner's explain how they safeguard patient data in their descriptions.Clinical Practice Research Data Link (CPRD) AboutThe Clinical Practice Research Data Link (CPRD) is a research service that supports public health and clinical studies. It collects anonymised patient data from a network of GPs across the UK, linking it with a range of other health related data to create datasets that can provide long-term insights. CPRD services are delivered by the Medicines and Healthcare products Regulatory Agency with support from the National Institute for Health and Care Research (NIHR), as part of the Department of Health and Social Care. Jenni Quint and her team are experts in working with CPRD data. As part of the preparatory work for Inflammation and Immunity, and in collaboration with the SAIL Databank, they created a "research-ready" dataset based of patients with chronic respiratory conditions, specifically asthma, Chronic Obstructive Pulmonary Disease (COPD) and Interstitial Lung Disease (ILD). It contains data relating to demographics, diagnoses, ongoing GP or hospital care,) and medications. This dataset also has the capability to link to wider records pertaining to co-morbidities, other health conditions, and health care history. Along with its sister registries held in DataLoch and SAIL Databank (see below), this dataset is now an exemplar of a clinically validated data resource for respiratory research. Useful linksHow does CPRD safeguard patient data?Find out more about the development of a CPRD Trusted Research EnvironmentVisit the CPRD website DataLoch Image AboutDataLoch is a data service that has been developed in partnership by the University of Edinburgh and NHS Lothian. Its mission is to put data at the centre of responses to health and social care system challenges to improve research, innovation and planning. They bring together health and social care data from South-East Scotland to be used for research purposes.Building on the research-ready datasets created through CPRD and SAIL and supported by MRC funding through the BREATHE Health Data Research Hub, our team created a “research-ready” dataset of patients with chronic respiratory conditions, specifically asthma, Chronic Obstructive Pulmonary Disease (COPD), Cystic Fibrosis, Interstitial Lung Disease (ILD) and wheeze (a common respiratory symptom). It contains data related to demographics, diagnoses, ongoing GP or hospital care, and medications. Along with its sister registries held in CPRD and SAIL Databank, this dataset is a now an exemplar of a clinically validated data resource for respiratory research.Useful links How does DataLoch keep data secure?Visit the DataLoch website What is BREATHE? Honest Broker Service (HBS) AboutThe Honest Broker Service (HBS) is the Trusted Research Environment for Northern Ireland. It provides key services to internal Health and Social Care organisations and the Department of Health, by providing data for clinical audit and service improvement projects. Academics can apply to access this population-level de-identified health data for research purposes. Relevant linksFind out more about the Honest Broker Service Secure Anonymised Information Linkage (SAIL) Databank Image AboutThe Secure Anonymised Information Linkage (SAIL) Databank is the Trusted Research Environment in Wales. SAIL is funded by Health and Care Research Wales and is based within the Medical School at Swansea University. It houses linked population-scale health and administrative data, across multiple levels of care and settings. Several members of our steering group previously worked with SAIL through the BREATHE Health Data Research Hub. This partnership led to the creation of a “research-ready” dataset based of patients with chronic respiratory conditions, specifically asthma, Chronic Obstructive Pulmonary Disease (COPD) and Interstitial Lung Disease. It contains data related to demographics, diagnoses, ongoing GP or hospital care, and medications. This dataset also has the capability to link to wider records pertaining to co-morbidities, other health conditions, and health care history. Along with its sister registries held in CPRD and DataLoch, this dataset is a key resource, forming the foundations which we will build upon.Relevant linksHow does SAIL protect patient confidentiality?Visit the SAIL websiteWhat is BREATHE? Page publication date: 9/11/2023Last updated: 28/03/2024 This article was published on 2024-09-24
