Health and social care - data strategy: consultation

6. Part 2 - Empowering Those Delivering Health and Social Care Services

People involved in delivering health and social care services have told us that they should be empowered with the confidence and ability to collect and use high quality data to deliver high quality health and social care services.

To empower those delivering health and social care services, we need to give people the right skills, technology, access, and frameworks. Doing so will empower staff to confidently use data to deliver high quality care and improve services – this is sometimes referred to as data literacy.

Data skills & training

We must build data skills across the health and social care sector recognising that where specific technical data skills do currently exist staff are often subject to extreme workloads and that recruitment and retention has proven difficult.

To build skills in the sector there must be training and guidance on:

• data handling, analysis, interpretation, and manipulation;
• using the right language to explain data to those receiving care, with particular attention to comprehension and age appropriateness;
• understanding the value of data, improving its quality and benefits of its collection;
• how data is being used;
• the ethical implications associated with the collection of poor-quality data;
• upholding privacy, including the importance of access controls;
• privacy enhancing techniques such as anonymisation.

We understand that guidance is required across the health and social care sector to enable staff to understand data terminology and their roles and responsibilities in relation to data, standards and sharing. Through clear guidance, we can help to ease the apprehension staff may feel when being asked to share data across the sector.

Technology & infrastructure

In the Strategy for Care in the Digital Age we committed to ensuring that technology enables people to interact seamlessly across health and social care services. As a result, there are several programmes underway to improve our technology and infrastructure across the health and social care sector. Our ambition is to have technology and infrastructure that is designed in a way that allows health and social care professionals to easily capture and share quality data.

At present health and social care data is often held in silos. As data is recorded and stored in multiple systems, with limited or no interoperability, this limits the number of people that can access the information. This can also be difficult and time consuming to gather and share information.

We have also heard about the importance of improving the technology used to interpret and visualise data in a way that was meaningful and insightful. This was alongside the need to implement more tools for validating data to improve its quality and enable greater sharing. There is a recognition that improving user confidence should include making data skills training and governance processes around accessing and storing data more accessible.

Our engagement so far has told us that health and social care professionals want systems that are designed in a way that require individuals to capture quality data, for example, templates could be provided to make it easy to record and comply with the new standards. Improved systems are required to allow quality management information to be captured which would allow standardised reports to be produced and shared.

Data standards & interoperability

The Data Strategy will aim to bring greater interoperability to health and social care data and systems by seeking to apply a more consistent approach to data standards. This is aligned with the commitments set out in Scotland's Digital Strategy. We want to facilitate greater consistency in how organisations across health and social care gather, store, and share data. Paving the way for clear guiding principles within which to enable national and local decision making, as well as improved direct clinical and social care.

Improving the consistency of how data is gathered, stored, and accessed across health and social care would allow greater interoperability across the health and social care sector. For example, sharing data between a GP surgery, care home and hospital would reduce the need for individuals to have to answer the same questions from distinct parts of the health and social care system. It would also ensure that professionals have a complete picture of an individual's health and social care record.

Driving the understanding and adoption of standards and establishing ways of managing and governing standards will be essential to improving the way health and social care data and public sector data is used. They will enable health and social care professionals to better understand information assets, connect data from across the sector and innovate.

Reaching a level of consistency in storing and recording health and social care data will facilitate greater access to, sharing of and use of health and social care data. However, without this consistency and complete data, Scotland's health and social care ecosystem will not be able to fully take advantage of the opportunities presented by innovative technologies. It may mean that opportunities to automate processes, speed up sharing of information and provide greater decision support to health and social care professionals are missed.

Information governance

While we aspire for greater access to and sharing of data, we recognise that the security and privacy of an individual's health and social care data is paramount to building trust with the public. We need to be transparent about how data is used and for what purposes, and the way in which people's data is considered when sharing with health and social care professionals, for research purposes and for wider public services.

Privacy by design is part of the data protection law and we will set out a framework of how we ensure information governance is considered at every step of our design. This will include putting the public at the heart of the design so we can ensure that ethical, security, privacy, people's rights, and transparency are all part of the design.

Robust information governance and cyber security measures as well as the knowledge and ability to implement them is key to protecting data. We have legislative frameworks, controls and guidance which seek to ensure that always we treat personal data responsibly.

The Information Governance Review carried out by Scottish Government in 2021 forms part of the objectives of this strategy and will be fundamental in building a collective understanding amongst the public, health and social care professionals, industry users and researchers. This review found that too many organisations and decision makers find caution easier than recognising the benefits which can be achieved by using – and sharing – data in a responsible, safe, and rapid fashion. It is intended that the Data Strategy will lay the groundwork for an approach that will enable quicker and easier sharing of data in a way that is consistently safe and secure.

Management information

Health and social care professionals, carers, and other people responsible for delivering services told us that in addition to individuals' data the Data Strategy should also include management information. This in turn can then be used to manage and measure the delivery of services. They also told us that operational insight data which helps inform decisions around planning and personnel is also particularly important to the ongoing delivery of, and improvement in, services.

Population health data to improve health and social care outcomes

In addition to facilitating easier access to health and social care data for professionals in the sector, we also want to empower those delivering health and social care services by providing greater access to data that has the potential to improve health and social care outcomes across the entire population. Some examples may include greater access to the valuable data collected by housing providers or data gathered by private devices such as wearables, where individuals wish to share this.

6.1. Questions Part B

6. Considering skills and training opportunities for those delivering health and social care services:

6A. What are the top skills and training gaps relating to data in Scotland's health and social care sector?

• Data visualisation
• Understanding/use of management information by managers
• Understanding of what data exists and where to find it
• Knowledge of how to access data
• Confidence in using data
• Understanding of governance
• Other

6B. How do you believe they should be addressed?

6C. What actions must be taken as a priority to ensure that the public have access to health and social care data that they can understand and use?

7. Thinking about improving the quality of data that is used by health and social care services:

7A. What three things are needed to improve quality and accessibility?

7B. If you are responding on behalf of an organisation, what role do you believe your organisation has to play in improving accessibility and quality of health and social care data?

7C. What data, that is generated outside of the health and social care sector, do you think could be made available to health and social care professionals to improve health and social care outcomes in Scotland?

8. We have heard that a more consistent approach to data standards will help improve insight and outcomes for individuals:

8A. To what extent do you agree with the proposal that Scottish Government should mandate standards for gathering, storing, and accessing data at a national level?

[agree, disagree. Unsure]

8B. What data standards should we introduce?

9. When considering the sharing of data across Scotland's health and social care system:

9A. Do you agree with the idea that greater sharing of an individual's health and social care data between the organisations in the health and social care sector will lead to better quality services?

[agree, disagree, unsure]

9B. If you are a clinician – how could we improve patient safety through better sharing of data and information?

10. Thinking about the actions needed to improve the quality of management information and internal reporting data across health and social care:

10A. What are the priority pieces of management information needed (that are not currently available) to provide better health and social care services?

10B. What is needed to develop an end-to-end system for providing business intelligence for health and social care organisations in Scotland?

11. Thinking about improving the quality and ability to reuse data sets across health and social care setting and for innovation & research:

11A. What key data sets and data points do you think should be routinely reused across health and social care to reduce duplication of effort and stop people having to re-tell their story multiple times?