Health and social care - data strategy: update 2024 - executive summary

Data Strategy Update for Health and Social Care : Executive Summary

Introduction

Scotland's first Data Strategy for Health and Social Care, published in February 2023, set out the importance of making effective use of data to improve the delivery of care and outcomes for the people of Scotland.

Vision

The Strategy's vision is to make best use of data in the design and delivery of services and is underpinned by three core ambitions.

Ambitions

• To empower the people of Scotland by giving individuals clear and easy access to, and the ability to manage and contribute to, their own health and social care data where it is safe and appropriate to do so.
• To empower those delivering health and social care services to have the confidence and ability to gather, safely use, and share data, to sustainably improve services and ensure outcomes are being met.
• To ensure fit for purpose data is readily accessible through secure and safe means for planning, research and innovation. Data will be used for the benefit of individual wellbeing and the public collectively, including the development of new and innovative ways of working, improving care, developing new treatments and technologies.

This executive summary sets out the progress we have made in our first year. We have been building the foundations towards realising our vision and ambitions, across the Strategy's eight
key themes. You can read more about our progress and priorities in the full Data Strategy Update.

Progress in improving people's access to data

• The ethical use of data remains core to our Strategy. We have engaged widely to develop guidelines on the ethical use of data to support public trust and transparency and provide assurance that health and social care data is used ethically and for public benefit.
• We continue to build the foundations for a Digital Front Door and to identify the investment required for delivery by 2026. This will provide people with access to their data with an initial likely focus on providing communications such as digital letters. This will support people to better manage their conditions and ensure transparency over the decisions that are made about their care; and ensure that their records
  are accurate.
• We have engaged with the public to inform development of an Integrated Social Care and Health Record. Subject to suitable investment, the Integrated Record will allow people to contribute to their data and share it with those involved in their care; enabling people to tell their story 'only once'. The Integrated Record will also provide professionals with access to the right data at the right time, reinforcing confidence in the available information. We are also working to create an initial release of the Integrated Record, for testing with a small audience.
• To make best use of data to improve delivery of care, we need high-quality data that is reflective of the population of Scotland. We are working to improve the quality and consistency of protected characteristics data to ensure that it can be used to reduce inequality and improve services for everyone.

Developing a Digital Front Door and an Integrated Social Care and Health Record will provide you, as a member of the public, with the ability to access and contribute to your health and social care data. This will allow you to ensure that the data held is accurate and enable you to update some of the things that are important to you, such as your protected characteristics data, where it is safe and appropriate to do so. This will help to drive up the quality and consistency of data, ultimately helping to provide better services and reduce inequalities in the care provided for people in Scotland. These programmes of work will also support you to better self-manage your care and prevent you from having to re-tell your story multiple times when interacting with those who are involved in providing care for you.

Our work to empower professionals in making effective use of data

• We are developing the ability to enable the Emergency Care Summary and Key Information Summary to be stored in the National Digital Platform (NDP), making it easier for professionals to access and use primary care data across the health and care sector.
• We have further developed the National Digital Platform, including building on the capabilities of the National Clinical Data Store (NCDS) that sits within NDP. For example, we are expanding the data storage capabilities of NCDS to securely store data such as dermatology images to support our aim of collecting data once and using it multiple times.
• COSLA, COSLA's Digital Office and Improvement service are working collaboratively to develop a data catalogue that will make it easier
  to understand what data is available – helping professionals to access the right data and reduce duplication of effort across the system.
• We have developed data skills training and resources, and a Digital Data and Technology competency framework to set out the digital skills required in the sector and ensure that staff have the skills and confidence to use data effectively.
• We developed a plan to progress the workstreams of the National Information Governance Plan. Based on extensive engagement, this will deliver more streamlined Information Governance. It will provide clarity and make it easier for staff to understand their roles and responsibilities and support the safe and appropriate sharing of data across organisations; and provide staff with access to the data they need to deliver the best care possible. We also continue to develop the Cyber Centre of Excellence to build resilience and ensure the
  security of data is upheld.
• The Seer 2 platform commenced in November 2023, enabling users to create insight from data by giving access to near real-time high-quality data sets for analysis. Seer 2 provides the technology that informs effective planning and decision making, ultimately improving services.
• The Shared Alarm Receiving Centre commenced in October 2023, supporting effective sharing of data across service providers, Local Authorities and Health Boards. It enables professionals to have access to the right data at right time, to plan and deliver services efficiently and effectively.

As we modernise our technologies and infrastructure for storing and accessing data it will make it easier for health and care professionals to access the right data at the right time. Bringing data together in platforms such as NDP and Seer 2 allows them to leverage near real-time data to support monitoring of hospital admissions, bed availability and Emergency Department performance. These programmes facilitate collaborative working and provide professionals with the insight needed to support planning and improve outcomes for patients. Of course, making it easier to access data is only one element to empowering professionals to make effective use of data. That is why we are continuing to develop training and resources to ensure that they have the right data skills. Specifically, one area we want to improve is Information Governance processes including improving people's understanding of when it is safe and appropriate to share data to facilitate effective sharing of data whilst upholding the safety and security of the data that they use.

Our work to ensure data is readily accessible for researchers and industry

• The Public Benefit and Privacy Panel provide the overall governance mechanism for approving access to data for research purposes. Research Data Scotland has reviewed the approvals process to assess best practice and provided recommendations to drive improvements for a consistent, streamlined, efficient approvals process in Scotland.
• Research Data Scotland has launched a new Researcher Access Service. This provides faster and easier access to data for research purposes. It will increase the throughput of research to inform development of new and innovative treatments, and ultimately improve delivery of care.
• Work is under way to revise the Safe Haven Charter and implement an accreditation scheme for NHS Data Safe Havens in Scotland. The existing Charter sets out:
  • the safeguards for protecting individuals' identities and privacy and ensures data is used ethically for public benefit;
  • the function of the Safe Havens and the agreed principles for their operation.
• Revising the Safe Haven Charter and implementing an accreditation scheme will streamline the approvals process for research projects, support Data Controller confidence, facilitate use of NHS data at greater speed and scale, and support life sciences research by providing an agreed framework for industry engagement.
• We have developed an equalities dataset that is now available in the National Safe Haven, enabling research to be undertaken on equalities impacts and outcomes. These insights can then be used to drive improvement and reduce inequality of care for people in Scotland.

By developing a revised Safe Haven Charter and launching the Researcher Access Service it will become easier for researchers to access more data than ever before, in a consistent and standardised manner (through the Safe Haven Charter) and access this data at speed and scale by providing a more streamlined information governance process (through the Researcher Access Service). In doing so, ensuring ethical use of data for public benefit. These programmes will give researchers and innovators, more readily available access than ever before. This will also maintain the safety and security that encourages people in Scotland to trust our approach, at the cutting edge of health and care development, to create better health and care services and experiences for everyone.