Heart disease: action plan

7. Priority 4: Effective use of data:

We will ensure that high-quality, standardised data is available and used effectively to support clinical decision-making, understand patient outcomes and enable better service-planning.

To support all the ambitions and actions in this plan it is necessary for healthcare professionals and policy makers to have access to a range of information and intelligence to support services and enable improvements in patient outcomes. Improved access to data supports high quality research and quality improvement.

Providing national leadership and support on this area is crucial. This will involve the development of quality indicators, the identification of key questions which could drive improvements in patient care and outcomes across Scotland, and the mapping and standardisation of datasets to make measurement against those indicators possible.

There are a number of areas relevant to heart disease where we must make a particular effort to improve our data collection and utilisation. As noted in previous chapters, there are particular gaps in our understanding of access to diagnostics, gaps in the information held about access to, and outcomes from inclusion in, services such as specialist nursing services, palliative care and cardiac rehabilitation.

7.1 Quality Indicators

It is important to be able to identify and reduce unwarranted variation to help drive improvements in safe, effective and patient centred care for people with heart disease across the country.

The identification of key timescales, interventions and outcomes enables measurement to support learning, and service development, evaluate new models of care and identify unwarranted variation. Such indicator development should be co-produced by healthcare professionals and people with lived experience of heart disease. Inclusion of patient reported outcome measures can help to ensure that we are delivering improvements in line with the needs of people with lived experience.

To ensure that such indicators are evidence based, they should reflect relevant NICE and SIGN guidelines.

The delivery of truly person-centred care requires careful consideration of any unintended consequences that may widen inequalities and so indicator development, and data collection based on them, must consider this to ensure that addressing inequalities forms a core part of the learning and development of services.

7.2 Data

The ability to measure against those quality indicators, is dependent upon effective use of data from a wide range of sources, including important data collected in primary care and community settings, secondary and tertiary care. There must also be consideration given as to how to incorporate patient experience and input. Linking all this data together where appropriate provides a deeper view of quality across the pathways and provides a perspective of care closer to the patient.

The ability to access high quality, linked data also provides important opportunities for research which will drive improvements in cardiovascular health. Utilising data for research helps to uncover improved strategies for prevention, innovative new therapies and medical breakthroughs that will ultimately improve the lives of people affected by cardiovascular disease.

There is an abundance of data relevant to heart disease in Scotland that is routinely collected within the healthcare system. However, it is not always recorded, coded or used consistently and this has significantly limited the ability to identify variation and support learning. Accessibility of data for researchers and health care professionals is another often cited barrier.

We will take a national approach to mapping, streamlining and standardising the data currently collected, improving the interoperability of systems in different care systems or across geographical areas and identifying and addressing gaps in data collection based on the heart disease indicator requirements.

Similar work has already taken place at national level for data relating to cancer. The Innovative Healthcare Delivery Programme (IHDP) and National Services Scotland (NSS) collaborated to create the Scottish Cancer Registry and Intelligence Service (SCRIS). A key remit of this programme was to develop a National Cancer Intelligence Platform that enables healthcare professionals to access cancer-related information and intelligence. The Scottish Cancer Registry and Intelligence Service Dashboard went live for NHS users in May 2019. It provides a single point of entry to national cancer data, bringing together a range of cancer indicators presented at Scotland, NHS Board and Regional Cancer Network level.

We will learn from that work and bring together key stakeholders to improve access to data relevant to heart disease in Scotland.

7.3 Actions

1. We will work with Public Health Scotland to deliver a Scottish Cardiac Audit Programme with an effective governance structure to support audit and improvement of services for people with heart disease.

2. As part of a Scottish Cardiac Audit Programme we will support the development of a wider range of heart disease and risk factor quality indicators to gain a better understanding of the provision of care for people with heart disease across the full pathway of care.

3. We will support the inclusion of patient reported outcome measures within indicator development.

4. We will take a national approach to improving access to data relevant to heart disease in Scotland. This work will include, using the agreed indicators to support data mapping, streamlining and standardisation of information currently collected relevant to heart disease in Scotland.

5. We will establish a platform that that enables healthcare professionals and researchers to access current heart disease related data and intelligence.