Beating cancer: ambition and action

9. Quality Improvement

Our Ambitions

To become one of the highest performing cancer healthcare systems internationally.

To improve data sharing, including in real time, to drive improvements in care, quality health delivery, improvement programmes, performance management and research.

Accurate and systematic recording and collation of data is fundamental to improving outcomes for people with cancer, and tackling the problem of Scotland's higher cancer mortality relative to other similar countries.

Data and Informatics

Access to high quality, accurate data is an essential part of good person-centred care. The highest performing healthcare systems internationally are supported by data sharing, often in real time, to enable person-centred care, quality healthcare delivery, improvement programmes, performance management and research. Accurate and systematic recording and collation of data is fundamental to improving outcomes and tackling the problem of Scotland's higher cancer mortality relative to other similar countries.

NHSScotland is awash with cancer data. The problem is that it currently exists in separate and unlinked locations. In England, similar problems have been overcome through the development of the National Cancer Registration System (NCRS) and the National Cancer Information Network (NCIN) within Public Health England (PHE). These bring together all available cancer information by a process of 'scraping' the data from various locations and processing it to achieve a coherent record of the individual's journey, accessible by clinicians in near real time, and available for secondary uses as such as service planning, audit and research. PHE have very recently merged these central cancer registration and analysis functions to create the National Cancer Registration and Analysis Service (NCRAs).

A problem - but above all an opportunity - facing the whole of modern health care is the rapidly increasing amount of data potentially available to inform and improve care. Currently, Scottish cancer services devote significant energy and resource to managing and using cancer data. In areas where electronic solutions and support are lacking, Boards and regions have had to develop a range of 'work arounds' to access and use these data, often involving significant human resource around data entry/re-entry.

The complex and multifaceted nature of cancer care, with its emerging new diagnostic (e.g. genomics) and treatment, such as immuno-oncology. modalities, is leading to the generation of massive data sets which will need to be organised and harnessed to optimise outcomes.

To achieve this will require the involvement and collaboration of many individuals and organisations and will demand a sustained effort over a period of years. The ultimate prize will be the establishment of the 'Scottish Cancer Intelligence Framework' (SCIF), where relevant cancer data can be effectively, efficiently and securely captured, moved, filtered, stored, quality assured, analysed and visualised for a range of purposes outlined in the box below.

The Scottish Cancer Information Framework (SCIF) aims to ensure systems are in place to:

• Enable all eligible clinicians involved in the care of people living with cancer to have direct, near real time access to cancer data.
• Enable all eligible people living with cancer to access their own data to support and facilitate self-management.
• Improve cancer audit processes and generate an ethos of continuous quality improvement which addresses inappropriate variations in treatment and outcomes.
• Support better performance management and service planning of cancer services.
• Benchmark cancer services and outcomes in Scotland with the rest of the UK and more widely.
• Enhance research and innovation opportunities in Scotland.

Many of the foundations and clinical support needed to deliver this framework are already in place. For other elements there is much still to be done. To focus and coordinate effort, the Innovative Healthcare Delivery Programme (IHDP)^[82] was established in 2015.

This programme, which is embedded in the Farr Institute, aims to harness the power of informatics to deliver value directly to individuals, healthcare professionals and the wider NHS through collaborations with academia, industry and the third sector. The IHDP team has recently undertaken a series of visits to all five Scottish cancer centres, to map data sources/systems and gather intelligence more widely. These visits have further highlighted the technical and organisational barriers that exist developing SCIF, as well as identifying information gaps.

Key amongst these is the need to capture data from Multidisciplinary Team (MDT) discussions across Scotland and all tumour types. MDTs are the hub of the clinical decision making process and there is an urgent need to provide them with more support. More generally, the IHDP is providing leadership around the task of re-engineering and extending national data flows to create a dynamic national cancer registration service, focused on improving outcomes.

National Cancer Quality Performance Indicators Programme

The NHS has a duty to deliver the best standard of care based on the latest available evidence. The role of SIGN in developing evidence-based guidelines therefore remains essential. There is also a recognised need for national cancer quality performance indicators to support a culture of continuous quality improvement in NHSScotland.

Addressing variation in the quality of cancer services is pivotal to delivering the improvements envisaged in this plan. This is best achieved if there is consensus and clear indicators for what good cancer care looks like.

Through the auspices of the National Cancer Quality Steering Group (NCQSG), National Cancer Quality Performance Indicators (QPIs) were developed to drive continuous quality improvement in cancer care across NHSScotland. Small sets of cancer specific outcome focussed, evidence based indicators are in place for 18 different tumour types. These are underpinned by patient experience QPIs that are applicable to all, irrespective of tumour type.

These QPIs ensure that activity is focused on those areas that are most important in terms of improving survival and individual care experience whilst reducing variation and supporting the most effective and efficient delivery of care for people with cancer.

This programme is supported by Healthcare Improvement Scotland (HIS). The National Cancer Quality Programme CEL 06 (2012)^[83] requires NHS Boards to report against QPIs as part of a mandatory, publicly reported, national programme. A rolling programme of reporting is now in place with three national tumour specific reports published annually.

National reports, published by HIS include comparative reporting of performance against QPIs at Board level across NHSScotland, trend analysis and survival. This approach helps overcome any issues relating to reporting of small volumes in any one year.

In addition to the three yearly national tumour specific reports, NHS Boards are required to collect data and analyse these on a yearly basis so that Regional Cancer Networks can then produce annual action plans to address any areas of variance or concern and report them via the relevant Regional Cancer Advisory Group. These are published on the websites of Regional Cancer Networks.^{[84, 85, 86]}

HIS undertake independent assurance of the performance and progress against QPI data at the three yearly point. This ensures that both Boards and Regions are working cohesively towards continuous improvements in the quality of services. This process also considers other evidence such as action plans, the governance structure of RCAGs and clinical narrative to ensure that services have improved over a period of time or are working to improve. It also allows clinical networks a voice in the process and an opportunity to consider their own progress and to challenge progress at a national level.

A programme to review and update the QPIs in line with evolving evidence is in place as well as a robust mechanism by which additional QPIs will be developed over the coming years.

personal Experiences

In Scotland, national surveys of patient experience of hospital and GP services have been in place since 2010 and, as noted above, the Cancer Quality Performance Indicators Programme has developed Cancer Patient Experience QPIs. Indicators were developed based on existing high quality patient experience evidence together with a public engagement process supported by the Scottish Health Council. There is measurement of three indicators - communication, information-giving and shared decision making. A survey of patients receiving radiotherapy across the five centres in Scotland was also carried out and reported in 2014.^[87]

In October 2014, the Cabinet Secretary for Health and Wellbeing announced a commitment that the Scottish Cancer Taskforce (SCT) would carry out a national experience survey amongst people with cancer. This is now being carried out and the findings are expected to be published in Summer 2016.

The Quality Strategy acknowledges that high quality experience of care is valued by people with cancer and should be prioritised alongside achieving excellence in clinical outcomes and waiting time targets. A poor experience of the care delivered can impact on a person's health and can adversely impact upon illness recovery. We are committed to promoting a positive experience of care for all people with cancer and ensure that they, their families and carers are treated with dignity, kindness, respect and compassion.

We know that people value most highly the dimensions of patient-professional interactions, communications, and being treated as an individual. We also acknowledge the link between individual experience, safety and the need for dignity and experience to be at the heart of care delivery.

We fully anticipate that health and social care services across the country will use the forthcoming results from the National Cancer Patient Experience Survey to benchmark performance on the issues that matter to people with cancer, and to use the information to improve the way that care will be delivered.

Actions - Quality Improvement

• We will provide up to £2 million additional funding over 2 years to support IHDP to deliver its aims.
• The NCQSG will improve data collection on secondary and recurrent cancers in order to better understand any issues these present for the quality and delivery of care and to examine ways in which we can provide improved support to individuals so affected.
• We will support and fund a National Cancer Patient Experience Survey, keeping under review how best to measure what matters to people with cancer and ensuring appropriate action is taken on results.