The Salford Integrated Record Research Database (known as SIR-RD) was established in 2009. Its initial aims were to create a pool of anonymized data from Salford patients primary care records (that is GP records) to enable research into health conditions affecting the Salford population. It also sought to bring in research investment into Salford to benefit health, jobs and local services.
To achieve this objective Salford health bodies invested in creating a dedicated body to manage the research side. This is known as North West E-health.
NorthWest EHealth was established in 2008 as a collaboration between Salford Clinical Commissioning Group, The University of Manchester, and Salford Royal Foundation Trust (now known as Northern Care Alliance, NCA). In 2016 we incorporated as a company limited by shares; all of our shares are owned by Salford Clinical Commissioning Group, The University of Manchester, and NCA. We employ over 70 staff covering both clinical and technical roles.
We are the leading experts in the field of electronic health records (EHRs) enabled randomised clinical trials (RCTs). We provided the technology that enabled the success of the Salford Lung study and are the only organisation in the world to have evaluated the safety and effectiveness of a pre-license medicine in a real-world setting.
Benefits of research in Salford
One of the first major research projects supported by SIR-RD was the Salford Lung Study. This offered GPs in Salford an opportunity to invite patients to take part in a research trial on new medications for lung disease. It was a unique trial at the time, as most health research uses hospital patients rather than those who only use general practice. Its results assisted clinicians to have a new therapy for Chronic Obstructive Pulmonary Disease (COPD)
All of the studies that use SIR-Rd must meet criteria that satisfy the SIR Governance Board they have the potential to benefit health of Salford population.
How it works
Medical data is extracted from GP systems and passed to NCA. This is attached to any information that NCA may have on a patient. This medical data is then hosted by NCA in a securely held data base.
This data is available for research but is anonymised before release to a researcher.
If a researcher requires access to a section of this data then they must meet certain criteria which satisfies the local approval process within a Governance Board.
Researchers need to complete an application pack. The application form includes the data fields requested and time frame extract required. The researcher also needs to demonstrate the potential health benefit to Salford’s population.
Any request for identifiable data is refused and also if the governance group believe that other criteria’s aren’t met.
The Governance Board review the request and make a decision on its approval or seek futher information from the requester. Some requests are refused on grounds of the request for identifiable information or if the co-hort is too large and the group believe that conclusions can made on less information. The privacy of individuals is priority at all times on reviewing requests.
Approved requests are then anonymised by NCA. Anonymisation is a process where personally identifiable information such as name, address, date of birth and postcode are stripped out of the release. Therefore, the end user can not identify who the original patient is.
What data is in the database?
The Salford Integrated Record will contain a summary of your most up-to-date, relevant health information which includes things such as:
- Your recent diagnosis and test results
- What allergies you have
- What medications and treatment you currently receive
- Any current or past (and significant) illnesses
- Encounters and referrals
Who is involved?
A number of organisations are involved in the Salford Integrated Care Record. Data is held by:
- Northern Care Alliance
- Salford General Practices
Processing of the data
- GP Data is held on Greater Manchester Shared Services Data Centre as they are the IT providers for GP systems.
- The Salford Integrated Record database is held by NCA.
Approval of Research
Clinical Commissioning Group members acting as Data Protection Officer for General Practice Data
- Clinical Commissioning Group members acting as Clinical Advisors
- NCA staff acting as Data Protection Advisors on behalf of NCA data
Who can access the database?
NCA staff who anonymise the data upon an approved research request.
How do I know that my data is secure?
Our IT partners have put in place robust technical and non-technical controls to ensure that your personal data is always kept safe and secure. We are able to monitor and keep audit logs so that your personal data is only accessed and used appropriately by staff.
Data is only transferred from GP Practices through using secure technology. The technology that is used is called Graphnet which is the General Practice system used for holding your medical records.
Once the data is received into NCA this is held in their data base environment.
What if I don’t want my data to be shared?
If you inform your GP that you do not want your data to be shared for research purposes then you can ‘opt out’ and your data will not be extracted from GP systems.
Can I access my records?
Under the Data Protection Legislation you can request access to all information that organisations hold about you. Please contact the organisations directly to request the information. Salford Integrated Record contains information from your GP and any NCA information (if you have been a patient there).
Data Protection Legislation Documents
We have a number of required Data Protection Legislation documents available on request:
- Data Protection Impact Assessment
- Data Sharing Agreement
- Data Processing Agreement
- HRA -IRAS registration