Data Usage Guidelines
The NCRI is a partnership of cancer research funders committed to working together to accelerate progress in cancer-related research through collaboration. NCRI has developed and maintained the NCRI Cancer Research Database (CaRD), a collection of well-curated data on all NCRI Partner funding and funded projects since to 2002. The purpose of the NCRI Cancer Research Database is to ensure a coordinated funding portfolio, promote collaboration and identify opportunities to advance cancer research.
The NCRI Executive understands that information from the NCRI Cancer Research Database is used in a variety of contexts and is supplied to a range of audiences. It is important that messages around the funding data are consistent and supported by available evidence.
These guidelines outline best practice for reporting data from the NCRI Cancer Research Database or insights derived thereof.
Citing the NCRI Cancer Research Database
You are welcome to use data or figures from the NCRI Cancer Research Database and insights from our analyses in any communications or reports. However, we ask that you reference the source of the data as:
Data from the UK National Cancer Research Institute’s Cancer Research Database (NCRI CaRD), accessed [month] [year].
For images/graphs or insights based on the data a shorter reference can be used:
Based on data from the NCRI Cancer Research Database (NCRI CaRD).
Where feasible, we ask that you please notify us ahead of any external communication, press release or report being published in which you use or refer to data from the NCRI Cancer Research Database.
Good practice when reporting data or insights from the NCRI Cancer Research Database
To help facilitate a more accurate interpretation of the data, it is helpful to add context where this is possible.
When reporting research funding by disease site, it is possible to report:
- The actual value e.g. £23.7M in 2015/16
- The percentage of total expenditure e.g. 3.2% of total spend
- The percentage of site-specific expenditure e.g. 6.4% of site-specific spend
Any caveats relevant to the data should be presented in the same place that the information is reported. For example, depending on the message being presented, it might be necessary to highlight that:
- The Cancer Research database records direct spending on cancer research and spend on resources and infrastructure that directly support or enable specific areas of cancer research.
- Although the NCRI Cancer Research Database (CaRD) captures most public cancer research funding in the UK using data provided by the NCRI Partners, it does not capture research funding from non-NCRI Partners.
- The exclusion criteria for adding information to the Cancer Research Database and different reporting periods mean that NCRI figures for research spend may differ from those published by Partner organisations themselves.
- The values reported by the NCRI are not routinely adjusted for inflation.
The specific inclusion criteria, apportionment by cancer relevance and approach to coding used by the NCRI allows valid and fair comparisons. However, care must be taken when considering other data sources. While it can be informative to compare information from the Cancer Research Database with information from other sources, it should be made clear that direct comparisons have several caveats that need to be considered, as noted above.
When carrying out analyses into historical funding trends, it should also be made clear whether the data has been adjusted for inflation or not.
Things to avoid
When analysing changes over time or performing historical analyses, it is important to show broad trends rather than focus on specific time points due to the nature of research funding. This reduces the possibility of interpreting ‘natural wobble’ (year-on-year fluctuation of the data) as a genuine change.
The NCRI Cancer Research Database should be a resource to capture broader trends and to identify opportunities to drive research forward in specific areas through careful analyses conducted by the NCRI on behalf of the NCRI Partners. Simply comparing spending between cancer sites or research areas without consideration of the wider context and research landscape is not recommended.
We do not support or condone direct comparisons of cancer research spend between NCRI Partner organisations or between sectors represented in the NCRI partnership, outside of internal analyses conducted by the NCRI on behalf of its Partners.
Where these guidelines are not adhered to in public communications or messaging, the NCRI reserves the right to revoke access to the data provided through the NCRI Cancer Research Database.
How we can help
The key to successfully reporting on data is to fully understand how the data has been collected and processed. The NCRI Executive are always looking to work with NCRI Partners and other interested organisations or individuals to make the best use of the information we hold.
Please use our online form to submit any requests for data or for specific analyses you would like our help with.
If you have any further questions, please get in touch.