Whenever a patient interacts with the healthcare system, data is routinely collected, this is called “Administrative Healthcare Data”. This data can be used to provide information on screening, surveillance, existing health conditions, diagnosis, treatments and patient outcomes. It can also be used to provide information on the real-world cost of healthcare. The data is held in individual datasets, which can be linked together to provide more information than just one dataset alone.
In the UK, Administrative Healthcare Datasets are generally held separately within each nation. In Scotland, cancer data is collected by the cancer registry. This dataset contains a lot of information such as the date of diagnosis and the type and stage of cancer, but it does not include detailed information on the treatment that was delivered. In order to be able to see a full picture of what the cancer services currently look like, the cancer registry data needs to be linked to other Administrative Healthcare Datasets.
The aim of this project is to create a linked dataset to allow mapping of the bowel cancer landscape in Scotland to identify differences in the treatment offered to patients and the outcomes associated with the different treatment approaches. An additional aim is to calculate the healthcare resource needed for bowel cancer diagnosis and treatment on a national scale, and the cost of providing this.
This manuscript documents the process of creating a specific and complete bowel cancer dataset for research in Scotland.
What we did:
There were four main stages in accessing and linking datasets on a national level.
Stage 1 – The first stage in accessing the data was to define the study requirements to apply to the Public Benefit and Privacy Panel (PBPP) for Health and Social Care in Scotland. The role of the PBPP is to weigh up the public benefits of granting access to healthcare data against the risks that the sharing of the data poses to an individual’s privacy.
Stage 2 – The second stage was to acquire the datasets to transfer them into the National Safe Haven (NSH). The NSH is a secure platform where the data can be used for research and analysis.
Stage 3 – All datasets that were to be released to the research team to analyse were checked by the electronic Data Research and Innovation Service (eDRIS) to make sure they matched the approved specification. The linkage of the datasets was performed by eDRIS once all the pre-checks had been completed.
Stage 4 – After the data linkages had been performed, the datasets were transferred to the National Safe Haven where researchers, with the correct approvals, could access the data. In this setting, all patient information like names and addresses were removed.
Linked Administrative Healthcare Datasets have huge potential to aid understanding of how patients interact with healthcare services and provide a detailed picture of the care they receive. This project demonstrates that the creation of a national linked administrative dataset is possible, by using bowel cancer data in Scotland as an example. It is however only possible through substantial effort and collaboration between researchers and the central team coordinating the data transfers and linkages.
The linked datasets have huge potential public and patient benefit by enabling researchers to analyse real world cancer data to improve outcomes for patients as well as the delivery of cancer services.
Several forces are contributing to an increase in the number of people living with and surviving colorectal cancer (CRC). However, due to the lack of available data, little is known about the implications of these forces. In recent years, the use of administrative data to inform research has been increasing. Administrative data is collected routinely ‘by government departments and other organisations for the purposes of registration, transaction and record keeping, usually during the delivery of a service’ (Woollard, 2014). Examples include hospital admissions data, education records and tax records.
The aim of one of our recent pieces of work was to investigate the potential contribution that this type of data could have on the health economic research of CRC. To achieve this aim, we conducted a systematic review of the health economic CRC literature published in the United Kingdom and Europe within the last decade (2009– 2019).
The literature search identified thirty- seven relevant studies, which we divided into economic evaluations, cost of illness studies and cost consequence analyses.
- We found that the use of administrative data, including cancer registry, screening and hospital records, within the health economic research of CRC is commonplace. However, we found that this data often come from regional databases, which reduces the generalisability of results.
- Further, we found that administrative data appear less able to contribute towards understanding the wider and indirect costs associated with the disease, particularly with respect to social care and indirect costs such as unpaid care.
- We also found that very few papers adopted a societal perspective when carrying out their evaluation meaning that often only direct medical care costs were included.
- Finally, we found that administrative data were less able to contribute when it comes to measuring patient health related quality of life (HRQoL) and preferences for those health states, which is vital particularly in EEs.
At the end of April, Peter and Elizabeth, along with lead author Dr Catherine Hanna and patient representative Mr Steve Clark, presented their recent publication at the Power of Population Data Science Webinar Series.
Very briefly, the manuscript published in the International Journal of Population Data Science – Creation of the first national linked colorectal cancer dataset in Scotland: prospects for future research and a reflection on lessons learned – describes the teams two year long endeavour to bring together a number of national and regional health care data sets as part of the Bowel Cancer Intelligence UK, COloRECTal cancer Repository (CORECT-R) project.
The webinar was very well received with over 111 people signed up to the event and around 70 in attendance on the day. We were thrilled to spread the word about all of the hard work that has gone into creating this dataset, as well as all of the research we have planned so watch this space!
This summer, after running our first undergraduate Health Economics module, a couple of enthusiastic economics students approached us to ask if there were any opportunities to get some work experience with Edinburgh Health Economics. Whilst we don’t run any formal internship schemes, we thought we could definitely think of some useful projects for the students to get involved with. In this post, one of those students talks to us about the work that she did during her voluntary internship and offers some reflections on how she found the experience overall.
Project lead reflections