Health and social care - data strategy: consultation analysis

Introduction

Background

The importance of high quality data in developing and delivering health and social care services is well known. As set out in the Strategy for Care in the Digital Age, the Scottish Government believes 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.

Development of Scotland's first Data Strategy for health and social care is underway. The Data Strategy aims to empower the use of quality data to drive high quality service delivery, bringing services together and improving the experience of the individual and their treatment. Extensive public engagement on the use of data has already been undertaken by the Scottish Government, but there is recognition that more work is required to help people improve their understanding and support of the use of data for public good.

A public consultation ran between 16 May and 12 August 2022. This was an opportunity to understand a wide variety of stakeholders' views on how data should be gathered, stored and used, which will shape the final Data Strategy, due for publication in early 2023. The consultation contained six closed and 26 open questions, covering three areas:

• Part One: Empowering people: asks 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 care: is aimed at those who work in health and social care services with questions about how to gain confidence in accessing, gathering and sharing relevant information to enhance outcomes.
• Part Three: Empowering innovators, industry and researchers: focuses on those who can deliver new technology to work for the public benefit.

Profile of respondents

In total, 162 consultation responses were received. Most were submitted via the online consultation platform, Citizen Space. Those received in an alternative format, for example, a PDF document, were entered into Citizen Space by the Scottish Government.

Individuals provided 62 responses to the consultation; the remaining 100 were from organisations. Organisations were asked to select from a list which sector their organisation belonged to, and 14 individuals also indicated the sector they worked in. The largest share of responses came from 53 public bodies, of which 28 were NHS boards, organisations or networks^[1] or health related public bodies, and 13 were Health and Social Care Partnerships (HSCPs). Third sector organisations (20), representative bodies (16) and academia (10) were also represented. Appendix A details the sectoral profile of respondents who took part in the consultation.

Analysis approach

The Lines Between was commissioned to provide robust, independent analysis of the consultation responses. This report presents the range of views expressed by consultation respondents under each section of the consultation document. A public consultation means anyone can express their views; individuals and organisations with an interest in the topic are more likely to respond than those without. This self-selection means the respondents' views do not necessarily represent of the views of the population.

Quantitative analysis

There were six closed questions in the consultation. However, because respondents did not answer every question, the quantitative analysis presented in this report is based on those who did answer. A full breakdown of the number and percentage response to each question is in Appendix B. Note that figures may not add to 100% due to rounding.

Qualitative analysis

Qualitative analysis outlines the key themes identified in responses to each question. The analyst team coded each response against a coding framework which was developed based on a review of the consultation questions and a sample of responses. In a small number of instances where alternative format responses contained information that did not align to specific questions, analysts exercised judgement about the most relevant place to include this material for analysis purposes.

A few organisations provided detailed responses reflecting their subject matter expertise. There is not scope in this report to fully summarise these responses; however, the responses are referenced where possible. Where appropriate, quotes from individuals and organisations are included to illustrate key points and to provide useful examples, insights and contextual information. Full responses to the consultation, where permission for publication was granted, can be found on the Scottish Government's website.

Weight of opinion

Qualitative analysis of open-ended questions does not permit the quantification of results. To assist the reader in interpreting the findings, we use a framework to convey the most to least commonly identified themes across responses to each question:

• The most common / second most common theme; the most frequently identified.
• Many respondents; more than 30, another prevalent theme.
• Several respondents; 20-29, a recurring theme.
• Some respondents; 10-19, another theme.
• A few / a small number of respondents; <10, a less commonly mentioned theme.
• Two/one respondents; a singular comment or a view identified in two responses.