What we did
Understand the need for change
Systemic Anti-Cancer Therapy (SACT): encompasses biological therapies as well as cytotoxic chemotherapy (anti-cancer drug treatment).
The review of the Scottish Cancer Registry (as outlined here) recommended that modernisation should include an ability to compare cancer data.
The need for, and benefits of, comparing SACT data nationally have been recognised for some time. For example, in 2014, at the instigation of the Scottish Cancer Taskforce, the clinical community had agreed the content of seven national comparative SACT reports. At the time there was no single SACT standard dataset across Scotland available to populate the national reports.
SACT data in Scotland exists in multiple disparate data sources with (until recently) no ‘national view’ of the data.
Although using the same system (ChemoCare® locally known as Chemotherapy Electronic Prescribing and Administration System (CEPAS)), SACT data is held in five different instances, all with different configurations and operational practices. The main driver for the original procurement and installation of CEPAS had been safer (electronic) prescribing, rather than the ability to collect SACT data comparable at national level.
The five instances of CEPAS are:
- one for the South East Cancer Network (SCAN)
- one for the West of Scotland Cancer Network (WoSCAN)
- three separate instances across the North Cancer Alliance (NCA) (Grampian, Highland and Tayside NHS Boards)
As each of these five instances recorded data against locally managed definitions, it was not possible to collate a pan-Scotland view on SACT. This lack of CEPAS harmonisation at the outset - despite being technically possible - was a key barrier to producing national and comparative SACT data.
No national user group existed to align ways of working.
For example, there was no forum to agree standardised regime naming / recording.
Collaborate with key delivery partners
Collaborate to achieve a national approach.
IHDP established the National Systemic Anti-Cancer Therapy (SACT) Data group to provide:
- a shared understanding of the need for change
- strategic direction
- expertise and insight into relevant issues
- engagement from across the cancer sector
- leadership to drive effective use of SACT data in Scotland
The Group includes senior representation from each of the regional cancer networks in Scotland, and IHDP. Members represent an NHS Scotland ‘constituency’, and act as a conduit for information flow between that constituency and the Data Group.
The SCRIS SACT workstream team worked closely with the National SACT Data Group, and in collaboration with cancer networks, to:
- map SACT data and regimes
- explore challenges
- share progress
- reconcile issues identified
This collaborative and action-focused approach was key to achieving services’ commitment to prioritise this work across the networks. One of the first tasks of the group was to develop a common language for SACT regimes to be used across Scotland.
As work to develop a national SACT database progressed, further groups were established to provide expertise, support decision making, and enable a national approach to data, information governance, and communication flows:
CEPAS (Chemotherapy Electronic Prescribing and Patient Scheduling System) Clinical Reference Group was established (2018) to get agreement on the SACT regime name protocols which would be used to develop an ongoing national view. This group meets quarterly and includes representation from clinicians (medical, nursing and pharmacy) and data managers, as well as PHS.A Scottish CEPAS User group was established (2019), to ensure that the functionalities of the latest version (v6.0) of ChemoCare® are harmonised throughout Scotland, and a truly national system is in place in the future.A CEPAS Oversight Group was established (2020) to oversee the migration of regional SACT data to the upgraded version of ChemoCare® to ensure harmonisation / standardisation across Scotland.
Iterative developments were shared with stakeholders (through the National SACT Data Group, the CEPAS Clinical Reference Group, and ‘in the field’ with practitioners) at key junctures to gather feedback, gain expert insights to steer direction and resolve any issues as they arose.
Stakeholders were able to see the resource being actively developed, and understand and participate in resolving the highly complex challenges.
IHDP facilitated conversations across cancer networks and with the CEPAS supplier (ChemoCare®) to ensure engagement, and support networks to successfully negotiate the specification for upgrading the system, to achieve a “once for Scotland” approach. As part of the upgrading work, the three ChemoCare® instances across the North Cancer Alliance (NCA) will be brought together into one instance.
The SCRIS SACT workstream team continue to engage with the CEPAS Oversight Group to ensure that the upgrade developments, and the final datasets produced by them, are compatible with the SACT national dataset and the data virtualisation technology which facilitates it.
A national approach means it is possible to maximise the advantages of using a common system while understanding what variations in local usage make sense, so long as they do not impact on the national view of the data.
Spotlight on
Collaborating across sectors to share expertise: Cancer Research UK
IHDP facilitated a collaboration between the National SACT Data Group, Cancer Research UK and Public Health Scotland to work in partnership to share learning over working with SACT data, to develop national SACT reports, and to engage stakeholders with outputs. Cancer Research UK have experience of working with Public Health England to produce national SACT reporting and were able to share their learning from working with SACT data at a national level.
Support the development of data virtualisation technology
Data Virtualisation (DV) is a novel approach which uses specific software to integrate data sets without moving or duplicating the data.
DV had been used in many other settings, but not to any extent in health, until the NSS IT team began to develop their thinking about potential applications, round about the time that IHDP came into existence. Both IHDP and NSS could see the potential for using DV within SCRIS - particularly for SACT data – and catalysed its introduction to NHS Scotland.
National reporting from disparate systems is challenging. Data Virtualisation technology presents the data through a ‘virtual window’ - users can ‘peer in’ to data held in different systems (for which permissions have been granted) without having to move or duplicate the data.
IHDP sponsored a Proof of Concept (PoC) study through the National SACT Data Group to demonstrate the feasibility of using DV to pull together chemotherapy data from the prescribing systems used across the five Scottish Cancer Centres, and develop a national picture of utilisation. This was one of a number of PoCs which NSS carried out, testing this novel technology in a variety of different areas.
Following the success of the PoC, the SCRIS team used DV to link the data in the five ChemoCare® instances to develop a National SACT dataset. This enabled national comparative reporting of chemotherapy treatment for the first time and allowed the identification of variations in treatment. DV has created the potential for further added value analytics alongside other national datasets held in PHS.
Key steps
Ensure appropriate mechanisms exist to develop a shared understanding of requirements both locally and nationally.
Be solution and action-focused.
Take an incremental and responsive approach, sharing progress with stakeholders so they can help shape developments.
Consider exploratory ways of testing feasibility, such as Proof of Concept studies.
Impact Stories
The ways in which IHDP’s approach and activities contributed to improved outcomes and impact are shown through impact stories.