Data Strategy for health and social care
Feedback updated 3 Jan 2024
We asked
The Scottish Government is developing the first ever Data Strategy for Health and Social Care in Scotland. A public consultation for the Health and Social Care Data Strategy was launched on 16th May 2022 and ran until 12 August 2022. The consultation sought views on the following:
- Part One: Empowering people, this section asked for views from individuals, advocacy and representative groups on access to personal health and social care data, as well as topics surrounding data control and privacy.
- Part Two: Empowering those delivering health and care, this section was aimed at those who work in health and social care services and asked questions about how to gain confidence in accessing, gathering and sharing relevant information to enhance outcomes.
- Part Three: Empowering innovators, industry and researchers, this section focuses on those who can deliver new technology to work for the public benefit.
In addition to the public consultation, the Scottish Government has undertaken extensive stakeholder engagement to obtain the views of organisations within the health and care sector as well as those of seldom heard groups.
You said
In total, 162 consultation responses were received. Individuals provided 62 responses to the consultation; the remaining 100 were from organisations. We heard a range of views on what matters most to people with regards to having greater access and control over their health and social care data. The importance of transparency and consent were a key theme in part one of the consultation. For part two, we heard views on the importance of data quality, data standards and interoperable systems to improve data sharing across organisations to improve the delivery of health and care services. Finally, for part three, we heard that people are supportive of their health and care data being used for research and innovation purposes on the basis that it will help drive medical advancements and be for public benefit.
We would encourage you to read the analysis of the consultation responses report to understand the full range of views provided.
We did
The Scottish Government's analysis of responses to the Data Strategy for Health and Social Care was published on 10th November 2022.
The responses from the consultation analysis will be used alongside the extensive stakeholder engagement that has been undertaken to inform the development of the Data Strategy for Health and Social Care. The Data Strategy will be published in early 2023.
Published responses
View submitted responses where consent has been given to publish the response.
Overview
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.
Progress of our Strategy to date
Work originally started in 2019 exploring people in Scotland’s opinions and ideas for the use and sharing of health and social care data. This initial engagement and research helped us identify seven ‘relationships’ that Scottish people have with their health and social care data. These are explored in detail in an interactive tool that explores peoples hopes and fears for the future, accessed on the Data Dialogues website.
In November 2021 we began a more detailed programme of engagement on our plans for a Data Strategy that followed on from the previous Data Dialogues.
In the first phase of our engagement, we spoke to stakeholders in the three user groups and asked them what they needed from a Data Strategy for health and social care data. From this first phase of engagement, we heard about eight key themes:
- Communication & Engagement
- Data Access
- Technology & Infrastructure
- Talent & Culture
- Ethical Approaches to Data
- Digital Exclusion
- Information Governance & Security
- Data Standards & Interoperability
We are using the information we gathered from the first phase of our engagement to inform this consultation.
Read the Easy Read version consultation paper
Why your views matter
The views gathered from participation in this consultation will help refine the Strategy’s vision and how it is achieved.
What happens next
What will we do with your responses?
Your responses will be gathered and analysed to input directly into the development of the Data Strategy for Health and Social Care. We will publish responses on the Citizen Space platform in line with Scottish Government’s commitment to openness and transparency. While this consultation is live, we will continue our engagement across the health and social care sector, through workshops, presentation, and open engagement session.
When will the Data Strategy be published?
There will be a phased approach to achieving the vision of the Data Strategy and phase one, setting out the vision, ambitions and actions will be published by the end of 2022.
Further phases will be published as we continue work on the Data Strategy over the coming years. Additional actions and delivery plans will be published until the overarching vision has been met.
Next steps in the consultation process
Where respondents have given permission for their response to be made public, and after we have checked that they contain no potentially defamatory material, responses will be made available to the public on our consultation hub, Citizen Space. If you use the consultation hub to respond, you will receive a copy of your response via email.
Following the closing date, all responses will be analysed and considered along with any other available evidence to help us. Responses will be published where we have been given permission to do so. An analysis report will also be made available.
Comments and complaints
If you have any comments about how this consultation exercise has been conducted, please send them to the contact address above or email to HSCDatastrategy@gov.scot
Interests
- Digital
- Health and Social Care
- Main hub
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