The National Cancer Registration and Analysis Service (NCRAS) compiles data about the full lung cancer patient pathway from a variety of data sources. Tasha Wood, audit project manager at the NCRAS, outlines how to obtain the patient-level data behind the National Lung Cancer Audit (NLCA) annual report.
Following a huge amount of work at trusts across the country to collect, validate and submit data about care provided to patients with lung cancer, we have recently published the National Lung Cancer Audit (NLCA) annual report 2016. A big thank you to everyone who was involved for completing the work so quickly.
So what’s next? We are:
- helping trusts to examine their own data by making extracts of data available to them
- working with trusts to help them to understand why additional cancer patients were included in the annual report but are not in the Cancer Outcomes and Services Dataset (COSD)
- using the feedback we get from trusts to make improvements to our own processes (eg to improve the algorithm that identifies the ‘trust first seen’).
Request a summary of your trust’s data
We know that trusts are keen to examine their own data. To make that possible, you can now request patient-level data for patients who were diagnosed with lung cancer in your trust in 2015. We are able to provide data about performance status; cancer stage; forced expiratory volume in 1 second (FEV1); MDT meeting date; clinical nurse specialist (CNS) indicator; treatment date(s) and treatment type(s); and electronic data source.
Several trusts have already reviewed their data and have gained useful insights from them.
To request these data, please contact your local NCRAS data improvement lead (you can find their details at the bottom of this blog post). You will need to provide an NHS email account to ensure the the data can be sent to you securely.
Several trusts have already reviewed their data and have gained useful insights from them
Reviewing patients not included in COSD submissions
We are aware that approximately 6,000 more patients were included in the annual report than were included when the NLCA reported on trusts’ Lung Cancer Audit Data Set (LUCADA) submissions. Trusts will be keen to look at the additional patients that were in the cancer registry and who have been allocated to them but were not included in their COSD submissions.
The electronic data sources that are listed for these additional patients show which information the NCRAS used to create the lung cancer registration, including:
- death certificates
- pathology reports
- patient administration system (PAS) records.
The NLCA annual report 2016 includes just over 3,500 of these ‘non-COSD’ cases, over half of which were created by the NCRAS from death certificates and PAS records. The NLCA does not analyse or report on true death certificate only (DCO) cases, but NCRAS staff work hard to find additional data on these cases by remotely accessing trusts’ systems or by contacting trusts themselves. If there is corroborating evidence to support the lung cancer diagnosis (eg a CT scan report or pathology sample), such evidence would be included in the analysis.
The feedback that we have already received from trusts is helping us to investigate issues and to improve our processes, so we are keen for it to keep coming in
If the number of cases that are allocated to a trust is different to what they are expecting, trusts are finding it useful to look at the data to review the cases that have been allocated to them as the ‘trust first seen’. If you have cases that you feel should not be allocated to your trust, please let us know.
A number of trusts have sent us feedback following their internal review of their data. Some have found that several of the non-COSD cases are in their MDT database but have not been included in their monthly submission to the NCRAS. There are also a few cases where the date of diagnosis in the trust’s MDT database differs from the date in the registry data, and there are some cases that trusts do not think have lung cancer.
These insights are improving our processes
The feedback that we have already received from trusts is helping us to investigate issues and to improve our processes, so we are keen for it to keep coming in.
The NCRAS and NLCA teams are also doing more work on allocating cases to the ‘trust first seen’ because, from the feedback that we have received from trusts, it is becoming clear that the algorithm can still be improved. However, the most effective way to get this right is for trusts to submit relevant data correctly in COSD. We will also be sharing a document with collated ‘lessons learnt / hints’, based on the work that trusts and data improvements leads have carried out to review the non-COSD cases.
Thanks again for all the work that you have done to make sure that the NLCA provides top-quality information to guide improvements patient care.
Tasha Wood, NCRAS audit project manager
NCRAS data improvement leads:
- National - Karen Graham - Karen.Graham6@nhs.net
- East Midlands - Karen Graham - Karen.Graham6@nhs.net
- Eastern - Marianne Mollett - Marianne.Mollett@phe.gov.uk
- London – Katrina Sung – Katrina.Sung@phe.gov.uk
- North West - Karen Graham - Karen.Graham6@nhs.net
- Northern and Yorkshire - Laura Prenton - Laura.Prenton@phe.gov.uk
- Oxford - Matthew Lynch - Matthew.Lynch@phe.gov.uk
- South West - James Withers - James.Withers@phe.gov.uk
- West Midlands - Matthew Lynch - Matthew.Lynch@phe.gov.uk