Frequently Asked Questions
Please see the below Frequently Asked Questions for data requests
Can I use NELA data for quality improvement projects or evaluations?
Local teams from hospitals that take part in NELA have access to their hospital’s data entered as part of the audit and can use this information for local quality improvement. Requests for data from researchers external to the participating organisation must go through the application and approvals process.
Do I need to inform NELA if I use aggregate data for quality improvement projects or research?
Local data used by local participating teams do not need to inform NELA of how this data is being used. However, NELA must be attributed as the source of the data in publications or reports.
How do I attribute NELA in publications or reports?
Please attribute NELA as 'The National Emergency Laparotomy Audit (NELA), Royal College of Anaesthetists'. When describing funding please include the following statement 'NELA was commissioned by the Healthcare Quality Improvement Partnership (HQIP), funded by NHS England and Welsh Government and it is part of the National Clinical Audit and Patient Outcomes Programme (NCAPOP).' Additional information about authorship is provided here.
How do I request patient level data?
The first step is to reach out to the NELA project team to discuss your request. The team will then determine if the request is suitable or not, or if further information is required. In all cases, accepted proposals will need approval by the Data Access Request Group (DARG) hosted by the Healthcare Quality Improvement Partnership (HQIP), the commissioners and data controllers of NELA. Successful applications to the DARG will then require a data sharing agreement to be signed before data can be released.
Can I request patient level data that includes patient identifiers?
No. NELA can only release anonymous or pseudonymous data.
Can I request data that is not already in the public domain?
Yes, following the processes described above. However, we are unlikely to be able to provide access to data that has not yet been published or that is not otherwise in the public domain.
Can I collaborate with the NELA team on a project or proposal?
Yes, NELA has already collaborated with research teams on the EPOCH, EL Collaborative and ALPINE projects. Every approach for collaboration will be considered by the NELA team, and the decision on whether this can proceed will depend on the nature of the project and the capacity of the NELA team. If you wish to collaborate with the NELA team then please contact us to discuss.
Is there a cost to requesting data?
Some requests for aggregate data and all requests for patient level data will incur a fee both from HQIP and NELA. The charges are to recover the costs of managing the applications process and preparing extracts of data. The costs are likely to depend on the degree of complexity of the application, and will depend on whether this is limited to a simple extract of data, or requires additional input such as methodological or statistical support. We will be able to advise on costs once your completed application form is received. Fee schedules for NELA can be found here. HQIP fees can be found here.
Can I use extracts of patient level data for other studies?
No. Data can only be used in the manner described in the agreed research protocol. If you wish to carry out further studies not specified in the protocol then approval will need to be granted by the NELA team and the DARG at HQIP.
How long can I keep data?
There are no restrictions on keeping aggregate data.
However, extracts of patient level data must be securely destroyed after an agreed time specified in your DARF. Applicants should formally inform NELA and HQIP once data have been securely destroyed.
What about publishing my findings?
We expect that all studies using patient level data will be written up and published in a peer-reviewed publication. This is true even for 'negative' studies as the risk of publication bias from observational studies is even greater than for interventional studies. Wherever possible publications should be Open Access and researchers should include the costs of open access publication in funding applications for studies using NELA data. All studies using patient level data must be notified to HQIP in advance of publication.
How long will it take for my application to be reviewed?
NELA meetings are generally held monthly and applications are reviewed within these meetings. More complex applications may need discussion at more than one meeting. Therefore the minimum timescale before receiving a reply is likely to be one month, but the process may take longer for more complex applications. Turnaround times for HQIP review can be found here: https://www.hqip.org.uk/national-programmes/accessing-ncapop-data/
What is the legal basis that NELA uses to process personal information?
Under GDPR the following legal bases apply: processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller (Article 6 (1) (e and (Article 9 (2)(i processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health or ensuring high standards of quality and safety of health care and of medicinal products or medical devices, on the basis of Union or Member State law which provides for suitable and specific measures to safeguard the rights and freedoms of the data subject, in particular professional secrecy.
Under the Common Law Duty of Confidentiality (CLDC), NELA uses Section 251 as its legal basis to meet the CLDC.
NELA currently has approval under Section 251 to collect patient level data (reference number: CAG 5-07(d)/2013) for all emergency laparotomy patients admitted to hospital.