Health and social care: data strategy

Data Access

We want to empower individuals and professionals to make better informed decisions by providing access to the right data at the right time.

Background

People should have clear and easy access to, and the ability to manage and contribute to, their own health and social care data where it is safe, legal and appropriate to do so. This includes the ability to view and update personal information such as contact details, and to view and request updates to information contained in records such as test results, letters, treatment, and care plans – whilst recognising there will be perfectly valid legal reasons where some data is not accessible to an individual (or is accessible but cannot be changed). It is also essential that staff within the health and social care sector can access the right data at the right time to provide the right care and support.

Empowering people in this way will support greater self-care and enable them to ensure that their records are accurate. It would also create transparency about decisions that are made about the care and the support they receive, enabling them to better access information on their wishes, choices and decisions made about them, and enabling them to better participate in their own care. To truly empower people, we must ensure that the data is presented to people in a way that is accessible and understandable.

We want to ensure that health, social care and social work staff have access to the data they need, at the right time, to provide the right support to the people they serve. We are aware that information systems do not offer universal accessibility to make it easier to share information; this strategy seeks to illustrate how current systems can maximise information-sharing to support practice as we consider future innovations to meet this need.

We also recognise that there is benefit in providing access to health and social care data across wider public sector services such as housing, prisons, and social security services to safely improve outcomes. This is in line with our need to improve the quality and completeness of its data and consider the potential of data linkage to improve accountability for outcomes rather than inputs alone. One example of this cross-sector access is the sharing of homelessness data with hospitals to enable targeted support, helping people to secure accommodation and ensuring they are supported with ongoing care after being discharged from hospital.

We recognise that access needs to be managed in a safe and secure way. Access to data will be managed on a tiered basis from data that is closed, or published as open data similar to the principles set out in Open Data Institute’s Data Spectrum. Some examples are:

Open

• Open Data
• Published Stats

Shared

• Anonymous data for research
• Care plans

Closed

• Management information
• Workforce contracts

Where we are now

Data access for individuals is relatively light across Scotland, and mostly relies on people formally requesting access to their information in a time-consuming way. There are notable exceptions: in some areas, people can already provide information about their wellbeing through portals or remote monitoring technologies, but our ambition to enhance citizen access will improve this further – for example, in the same way that the whole population can now access their Covid Vaccination status. Another example of empowering individuals by allowing them to actively contribute to their record is My Diabetes My Way (MDMW). MDMW currently supports people to access their health record online or to upload a reading about their wellbeing. There are opportunities for this to be developed for other conditions or in different settings. Learning from MDMW’s success we want to further expand access to data.

Open Government. Through the Open Government Partnership and Scotland’s Open Government Action Plan the Scottish Government has committed to:

• Enhancing and increasing the involvement of people and staff in the planning, designing, and improvement of health and social care services in Scotland.
• Supporting Government openness, transparency, and empowerment through open data.

When opening up access to data, where appropriate we will ensure that we publish data that is useful, relevant, and accessible for the public. Public bodies are at different stages of publishing open data. Examples of national open data publication includes:

• PHS – Scottish Health and Social Care Open Data
• Scottish Government – Statistics.Gov.Scot
• Improvement Service – Spatial Data Hub

Organisations such as councils also publish open data locally for example on their websites.

Case Study - Innovation with Open Data

Open data published on the COVID-19 pandemic was used to create an innovative website to make the data accessible to people with visual impairments. Volunteers from the Scottish Tech Army created a site that played musical notes to create sonic graphs of COVID-19 cases, allowing visually impaired people to interpret COVID-19 data in a way that worked for them.

Data access for professionals. We want to build on the excellent work that is already under way across the sectors. For example, in health, good progress has been made on the sharing of data such as the use of Electronic Health Records and uptake of a clinical portal that provides clinicians with a single view of relevant patient data. However, we recognise that there is still more to be done, particularly where social work and social care services are involved, where information sharing is crucial for support provision in the community.

We are already investing in the infrastructure we need to improve access to, and the use of, data. As above, work is under way to improve GP IT systems and the technology used to store and share data. This will enhance access to GP data, and enable quality data to be stored and reused many times for multiple purposes, to allow us to better understand and improve the provision of care. Improving access to primary care data will serve wider purposes such as enable the monitoring of the health of the population, and support the planning and delivery of both primary care at a national and local level, and data use in approved research.

Another example of improving data access for professionals across health, social care and social work is collaborating to implement federated access to Microsoft Office 365 across organisations. Empowering the use of tools such as shared calendars, or allowing access to data storage environments such as team SharePoints, is a straightforward way of sharing important workforce data and improving integration and collaboration across multiple organisations. The Scottish Government and Local Government are also working in partnership on the shared commitment within the Digital Strategy for Scotland to increase the use of re-usable common solutions within the public sector.

Where we want to be

Data access for individuals. Work is underway to develop a Digital Front Door which will provide members of the public with digital access to their health and social care information. This will make it easier for people to view the information that is held about them and to exercise their right to update this in instances where the information held is incorrect. Through engagement, we will confirm data sources and data sets that are safe to be consistently shared. Data access will be enabled through the planned Digital Front Door.

To provide safe and secure access to data via digital methods, work is underway to develop a secure service for individuals to prove who they are as set out in A changing nation: how Scotland will thrive in a digital world.

Digital Front Door will provide further opportunities to share data for public benefit. For example, sharing health and social care data with Social Security Scotland to automate the process of getting benefits, or sharing health data with prison services to support vulnerable people such as those who require access to treatment and support for addiction or mental health.

Where information is published for people and it is proportionate to do so it will comply with the European Accessibility Act and the W3C Accessibility Principles.

Data access for professionals. Feedback from the Independent Review of Adult Social Care heard that people had to retell their story multiple times to different professionals. The Scottish Government and COSLA are committed to develop a nationally consistent, integrated, and accessible, electronic social care and health record. The integrated record will support people to tell their story once and ensure that staff have the right information at the right time to deliver the right care.

To improve professionals’ access to the right data at the right time we will set out principles to drive up discoverability, accessibility, interoperability, and reusability. This will make accessing data across organisations easier and enable better, more timely access to essential data across organisational boundaries, supporting staff to provide the best care possible. This will include making use of the planned new Community Health Index (CHI) system to allow better matching of data and enable improved data sharing across the health and social care sector.

Case Study - CHI Matching

The single community health and care system will ensure that an individual’s demographic details recorded include a valid CHI number. This is achieved by the implementation of an active CHI interface.

There are several benefits to those receiving care as well as those responsible for delivering care. This includes the compilation of a single community care record ensuring that lack of access to data is less likely to be a cause of inappropriate or inadequate care provision to individuals.

Practitioners and managers are given access to care history data to support immediate patient care and to understand, for example, longer term trends of service provision. The timely and straightforward access to documents complementing electronic data capture means that it is then available wherever care is administered.

Finally, and crucially, integrated systems will help to reduce duplication, save time, and improve safety, through faster and more efficient sharing of information. The new system is expected to go live in Argyll and Bute Council in 2023 to support them with their existing CHI link between social care and community health care records.

When opening up access to data and creating new systems we will adhere to the legal duties and powers that exist across protective and children’s legislation. We recognise the rights and responsibilities that exist for individuals, their carers or proxies, and the interplay these will have in contributing to and extracting from a data sharing system. To ensure that this strategy is taken forward within this legal framework the tiers system of access will require to reflect questions at initial access to ascertain whether powers exist to enable the individual to enter the individual record.

Our Commitments

When opening up access to data for individuals and writing publications about health and social care data, we will describe data and information using plain language.

Who is it for?

Public

Our Commitments

We will seek to ensure that digital means of accessing data allow those who do not have the desire/capacity/capability to access their own health and social care data to delegate access. We will do this in line with established processes and legislation for determining when proxy access is appropriate.

Who is it for?

Public

Our Commitments

Our analytic communities in Scottish Government, Local Government and PHS will expand access to analysis and insight of health and social care data by following an open government approach to accessing data. This will enable people to be better informed of their care and to help manage public expectations.

Who is it for?

Public Research & Innovation

Our Commitments

As set out in Scotland’s Digital Strategy, we will make more of our health and social care data available openly where it is safe, practical and lawful to do so. This will include providing an improved framework for open data to enable non-public sector organisations to access data in a safe way. This will support linking and usage of data to develop new insights and support innovation.

Who is it for?

Research & Innovation