2.1. Why are we carrying out a consultation?
The purpose of this consultation is to gather views on how data should be used or managed, across health and social care. These views will help shape the development of Scotland's first Data Strategy for health and social care, due for publication in 2022. The governing principle behind this work is to ensure that data is used responsibly and for the benefit of the people of Scotland. The consultation will be open for responses from 16th May 2022 until 12th August 2022.
The Scottish Government wants the people who access health and social care services to be at the heart of the improvements we make to health and social care data. That is why we are carrying out this consultation, to gather views and feedback on how data should be gathered, stored, and used. The consultation builds on extensive engagement with a wide range of stakeholders and on research carried out with the public.
Quality data is a key component for developing and delivering health and social care services. There is already excellent work underway across the health and social care sector but there is much more that can be done. This includes providing the people of Scotland with secure access to their own health and social care data. It is important to support trustworthy and fair research and innovation to develop the next generation of treatments and technologies, without compromising people's privacy.
The consultation is divided into three broad user groups, people of Scotland; those delivering health and social care services and industry, researchers and innovators. We all fit into one or multiple of these user groups so please complete as many sections as you feel comfortable completing.
You do not have to answer every question, but please consider each question from your perspective – for example, if you are answering on behalf of an organisation, in Part 1 think about what empowering individuals would mean for your organisation, if you are an individual member of the public, in Part 3 think about the role of researchers and their use of your data.
The scope of the consultation and the resulting Strategy will encompass the full range of data utilised by those who deliver and support the delivery of health and social care services and will address a broad range of themes.
2.2. Why are we developing a Data Strategy?
As set out in the Strategy for Care in the Digital Age, we believe that data should be harnessed to the benefit of the people of Scotland. This includes the delivery of better services, greater innovation, and ensuring the people of Scotland have greater access to, and greater control over, their health and social care information.
The use of data has changed in the last few years and the pandemic has played a role in catapulting health and social care data and statistics into everyday discussions. There is an opportunity to learn from our recent experiences of health and social care data. However, whilst we have some world-class data resources at our disposal, there remains considerable data gaps and we are still lacking information in some areas. These are gaps we must address to improve care in the future.
One of the initial drivers of the Data Strategy will be to align the existing work that is already underway to improve both the use and access to data in health and social care for the benefit of the Scottish people. The Data Strategy will seek to minimise duplication of effort and support collaboration at a national level. It will also ensure an inclusive approach to any solution or ambition for those who do not or cannot access services digitally.
There are a range of data with varying degrees of sensitivity and the public, rightly have an expectation that these are used responsibly and in ways that protect individual privacy. The last few years have seen significant research around understanding public perception of the acceptable use of the data that relates to them, including in research we commissioned ourselves in conjunction with NESTA.
This consultation builds on that extensive public engagement, and we recognise further work is required on helping the people of Scotland grow their understanding and support of the use of data for the wider public good. We hope for a large and diverse set of responses to this consultation so that we can consider the widest range of insight when developing a Data Strategy fit to serve the length and breadth of the nation and all who live here. Your views, gathered from participation in this consultation, are invaluable in helping us to refine the Strategy's vision and how it is achieved.
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