How is Alleviate funded?
Alleviate is led by the Health Informatics Centre (HIC) at the University of Dundee and funded by UKRI and Versus Arthritis. It is delivered in partnership with HDR UK as part of the Health Data Research Hub network.
Who is on the team?
See meet the team
How is the project governed?
The project is governed by a national steering group containing all the partners.
What if I don’t want my data in TRE?
Data is only provided into a TRE on request of the research organisation and subject to strict control. If an individual does not want their pseudo-anonymised data in the TRE they should contact the principal investigator of the specific study in question.
How will the data hub collect research data?
The hub itself does not collect data, it curates data from individual organisations who have committed to being part of the Alleviate project.
How will the data be anonymised?
Personal information such as names and addresses are removed from the data, and date of birth is set to the first of January, with only the year being retained to calculate age. Any source patient identifiers (such as NHS Number or CHI) are also replaced with pseudonymised identifiers, meaning the Alleviate data cannot be linked back to the source data easily.
When a query is run on the data, a lower threshold is set where results will not be shown; for example any counts under 5 will be replaced with 0. Counts larger than the threshold can also be rounded, i.e. an aggregate count of 17 could be rounded up to 20. This drastically reduces the chance of patients with specific characteristics being re-identified.
How is the data kept secure?
HIC is ISO27001 accredited and uses industry standards to maintain security.
How will the research data be linked?
Linkage is subject to the data that is ingested to the hub. It will be done on a case by case basis subject to stringent controls and requirements.
How can this data be used?
All data will be only used in accordance with permissions and ethical approval processes.
Who can apply for access to the data?
Researchers can access the Alleviate data by using the platform HDR Innovation Gateway.
Glossary of terms
|Alleviate||Alleviate is part of the APDP and is making pain data accessible to the research community|
|Advanced Pain Discovery Platform||The APDP is a national consortium that will break through the complexity of pain and provide potential new treatments to address a wide spectrum of chronic and debilitating clinical conditions.|
|Application Programming Interfaces (API)||An API is a computing interface that defines interactions between multiple software intermediaries. It defines the kinds of calls or requests that can be made, how to make them, the data formats that should be used, the conventions to follow, etc. Common platforms using an API include Facebook instant messenger.|
|Centralised approach||HIC currently hosts and manages hundreds of datasets on University of Dundee owned and managed data servers on the NHS Tayside Network. This ISO27001 secure location will be used by Alleviate’s Central Hub to host, curate and transform pain datasets using the Research Data Management Platform (RDMP). The Alleviate Team will host two copies of a dataset, one in its original form and the other transformed to be able work with the Discovery Tool. The Alleviate Team will work to automate removing metadata and data dictionary and provide this information into the HDR Gateway. Pseudonymised datasets within the Central Hub will be hosted (stored) within a secure Virtual Machine (VM) with software that can provide secure aggregate level queries on request to the HDR Gateway. If requested, the pseudonymised dataset can be accessed via the HIC TRE subject to stringent controls.|
|Chronic pain||Chronic or persistent pain is pain that carries on for longer than 12 weeks despite medication or treatment.|
|Cohort||A group of people who share a set of characteristics.|
|Curated pain data||The collection of data associated with pain|
|Data Dictionary||A document containing the field names, data types and descriptions of each field in the dataset. A Data Dictionary is an example of Metadata.|
|Data Controller ||Data Controller are responsible for the safe custody, transport, storage of the data and implementation of business rules.|
|Data Governance ||Processes, roles, policies, standards, and metrics that ensure the effective and efficient use of information in enabling an organization to achieve its goals.|
|Dataset||A data set (or dataset) is a collection of data. In the case of tabular data, a data set corresponds to one or more database tables, where every column of a table represents a particular variable, and each row corresponds to a given record of the data set in question.|
|Digital Research Service (DRS)||The DRS is the University of Nottingham’s equivalent of HIC and is participating in Alleviate as a Data Partner.|
|Federated approach||Data Partners who would prefer to host and curate their own data can join the project as a Federated Node. The Data Partner will provide to Alleviate staff which will be provided to the HDR UK Gateway. The Alleviate Team will work with the Federated node to transform locally held data into the OMOP format; this is required by the HDRUK Cohort Discovery Tool. The Federated node will provide a pseudonymised version of their data to a secure VM with query software (like the centralised approach), but the VM will be hosted and managed by the Data Partner (not HIC). A common identity management strategy providing a pseudo-id to an individual will support data linkage across different datasets.|
|Health Informatics Centre (HIC)||HIC is leading the Alleviate project and is based within the University of Dundee.|
|HIC Cloud Environment||Cloud computing platform where the HIC Trusted Research Environment is hosted and accessed from.|
|Hybrid architecture||An architecture that combines or adapts a previous system or environment.|
|Interoperable||The ability to share data between different computer systems.|
|Health Research Data UK (HDR UK)||HDR UK is a national institute for health data science. HDR UK is uniting the UK’s health data to enable discoveries that improve people’s lives. By making health data available to researchers and innovators we can better understand diseases and find ways to prevent, treat and cure them. HDR UK is a collaborator in the Alleviate project.|
|Metadata||An overarching term encapsulating any information about the data. This can take many forms, for instance: a written description of the data, a list of the columns and values present in the data, the technical data types etc.|
|On-boarding||The process of enrolling an organisation to take part in the Alleviate project.|
|Project Governance||Processes, policies, regulations, functions, and procedures and responsibilities that define the establishment, management and control of projects.|
|Research Data Management Programme (RDMP)||Research Data Management Platform : Health Informatics Centre : University of Dundee|
|Safe Haven or Trusted Research Environments (TREs)||Safe havens are highly secure virtual spaces for researchers to access sensitive data. Data does not leave the secure environment, hence researchers go to the data, the data doesn’t travel to them. TREs have multiple layers of security and safeguards in place, designed to minimise the risk of patient data being accessed inappropriately or misused.|
|Virtual Machine||A virtual machine is a program on a computer that works like it is a separate computer inside the main computer. These are used in Alleviate to isolate data and programs from other systems for security purposes.|