Consultation outcome

Data access policy update: consultation response

Updated 12 October 2023

Introduction

In Data saves lives: reshaping health and social care with data, the Department of Health and Social Care (DHSC) and NHS England committed to implementing Secure Data Environments (SDEs) as the default way to access NHS health and social care data for secondary uses.

Data access policy is shaping the implementation of SDEs across the NHS in England, providing clarity and guidance to the public and healthcare sector about the move towards a system of data access for secondary uses of NHS data.

DHSC published a consultation on 26 May 2023, which ran for 4 weeks, closing on 23 June 2023. The consultation sought views on 10 policy updates for data access policy. These updates included topics such as the scope of the policy and development of an accreditation model.

We are grateful for the 60 detailed and thoughtful responses received to the consultation and have carefully considered them. We have taken on board feedback in drafting a final version of this policy update, as well as considering how it can inform our longer-term policy development.

Overview

There were 60 responses to the consultation, which were received via email.

Types of respondents

The table below provides a breakdown of responses to the consultation by type of respondents, which we have grouped for the purposes of this consultation response.

Table 1: types of respondents to consultation

Type of organisation	Number of responses
Academic organisation (including universities)	13
Industry representative body	8
NHS organisation	8
Charity	6
Business (including SDE platform suppliers)	4
Government agency	3
Member of the public	3
Patient representative organisation	3
Life sciences company	3
Consultancy	2
Local authority	1
Government research funding body	1
Statutory independent advisory body	1
Other	4
Total	60

Next steps

We have carefully reviewed and analysed the responses. This document provides a summary of this analysis. It also sets out:

• the changes made to the data access policy update
• how DHSC intends to take forward wider data access policy in light of the consultation responses

A final version of the data access policy update has been published alongside this response.

Summary of responses

Responses to the consultation were generally supportive of the move from data sharing to data access and, where challenges were raised, this was done so constructively.

The delivery of the NHS Research SDE Network is run by the Data for Research and Development Programme. Some responses to the consultation were focused on delivery elements of the NHS Research SDE Network, such as specific details on the data that will be made available within the NHS Research SDE Network. These details on the data being made available are being shared with the programme’s Health Data User Group and will, over time, be integrated into the Health Data Gateway.

For further information on the delivery of the NHS Research SDE Network, see the Investing in the future of health research: secure, accessible and life saving blog post on the NHS England website.

Amendments and clarifications made in the policy update

Questions were raised about how the national data opt-out will apply to SDEs. SDEs must be compliant with the national data opt-out and we have clarified this position in the final version of the policy update.

There were questions raised in the feedback about what the commercial framework for the NHS Research SDE Network will look like and how much it will cost for access to NHS data through the network.

We have included an additional policy statement explaining that organisations entering data partnerships with the NHS through the NHS Research SDE Network will be expected to adhere to the principles in the Value Sharing Framework for NHS data partnerships. Specific details on the cost models for accessing data through the NHS Research SDE Network will be made available by the SDEs in the network, including the NHS England SDE.

There was feedback that the statement made on transparency could more clearly define the specific measures that will ensure transparency across the NHS Research SDE Network. We have clarified that transparency is core to the design of the NHS Research SDE Network, supported by its community of practice. Transparency will also be assured by the controls in the accreditation framework for the NHS Research SDE Network, currently in development with the UK Statistics Authority.

We also received feedback about the list of exceptions to the policy, with some stakeholders wanting further clarification about how decisions will be made on which use cases will be an exception. We have included a framework for how these exceptions decisions will be made based on legal, ethical and technical considerations.

Longer-term policy development

Responses highlighted a lack of clarity about the transition process for moving from a model of data sharing to data access, particularly that this transition should not happen overnight. We share this view and will be adopting a phased approach, where the infrastructure is ready to support the transition. By the end of 2023, we will share further information on what this transition will look like.

There were questions raised about how the Federated Data Platform (FDP) relates to data access policy and SDEs.

The FDP is for the NHS to access data primarily to support the direct care of patients. This includes several use cases such as:

• population health management
• care co-ordination
• vaccination and immunisation

However, in some cases, the FDP will be used to access NHS data for secondary purposes.

Given that the platform is still to be procured, it is too early to publish details of how data access policy will apply to FDP. We recognise that clarity on this is important and we will provide this as soon as feasibly possible - for instance, by providing future updates to our Secure Data Environment policy guidelines. The technical specifications for FDP mandate compliance with the Five Safes Framework, which can be read on the UK Data Service’s website, and adherence to all local or national information governance and data-sharing standards.

Responses were generally supportive of implementing an accreditation model to oversee SDEs that provide access to NHS data for secondary uses. Accreditation will ensure transparency and accountability to the public, while ensuring a high-quality, consistent experience for users. Work is underway with the UK Statistics Authority to co-design a new, amended version of its accreditation framework. Initially, the development and implementation of an accreditation model will focus on the NHS Research SDE Network. We will be publishing further information on accreditation in winter 2023.

There was a significant amount of feedback on the importance of public engagement in developing data access policy. We have included further information in the policy update about how public engagement will shape our decision-making processes. Throughout 2024 and 2025, data access policy and SDE accreditation will form part of the large-scale public engagement programme, also run by the NHS Transformation Directorate.

We recognise from the feedback that there remain a significant number of questions about moving to a model of data access. As we are iteratively developing and publishing policy, we do not yet have all the answers. This is a major national change programme, and we want to take time to get this right.

We will continue to collaborate widely and publish further information in future policy updates.

Responses to the consultation asked for further information on topics such as how:

• data linking will take place within the NHS Research SDE Network
• intellectual property will be protected
• data access policy will work across the 4 nations and internationally
• we’re factoring in local government and other public bodies

Some of these are policy questions to consider, while others are for delivery partners to answer. Consultation with stakeholders and the public will remain a key part of our approach as we take this work forward.