National Data Guardian 2018-19 report

National Data Guardian | August 2019 | National Data Guardian 2018-19 report

The National Data Guardian (NDG) has published a report reviewing the period between January 2018 to March 2019. 

National Data Guardian for Health and Care Progress Report January 2018-19 looks back over the work of Dame Fiona Caldicott as National Data Guardian for Health and Social Care in England. It also outlines the work that the Panel and  Dame Fiona Caldicott have carried out since January 2018 to uphold those principles.

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Image source: assets.publishing.service.gov.uk

She describes the progress made against the eight work priorities set in her 2017 report, and outlines the NDG’s new priorities for 2019 onwards – her first set of work commitments since the NDG role became statutory on 1st April 2019.

The National Data Guardian for Health and Care Progress Report: January 2018-March 2019

Creating the right framework to realise the benefits of health data

Department of Health and Social Care | July 2019 | Creating the right framework to realise the benefits of health data

This document provides an update on the development of government policy to:

  • establish guiding principles and a framework to help the NHS realise benefits for patients and the public where the NHS shares data with researchers
  • establish a National Centre of Expertise to provide specialist advice and guidance to the NHS on agreements for use of data

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The aim of the principles is to ensure that the NHS, patients and the public gain fair benefit from agreements involving the sharing of health and care data.

These agreements are intended to inspire public trust, through maintaining the highest standards of transparency and ethical data handling.

Read the guidance online:

Creating the right framework to realise the benefits for patients and the NHS where data underpins innovation

 

Innovating with NHS data

Public attitudes to organisations innovating with NHS data | National Data Guardian

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The National Data Guardian (NDG) has released findings from a poll on public attitudes to NHS organisations working with partners to use data to develop new medicines and technologies to improve health.

The poll tested what the public thought would be fair when partnerships with universities or private companies result in valuable new discoveries that could be traded commercially.  It found strong support for the idea that NHS and patients should benefit from such partnerships although significant proportions of respondents said they neither agreed nor disagreed with whether the range of benefits was fair.

The NDG is now calling for a debate about the relationships between the NHS and those innovating with NHS data.

Full detail: NDG poll findings

Using data-driven technologies to transform mental healthcare

Making the right choices: Using data-driven technologies to transform mental healthcare | Reform 

This report examines the current landscape of data-driven technologies and their applications in mental healthcare, highlighting areas where these tools offer the most potential for the NHS and its patients.  It discusses what makes mental health different from other areas of health, and the implications this has for the application of data-driven tools. It examines barriers to implementation, and proposes ways to move forward.

Key recommendations:

  • The National Institute for Care and Health Excellence should make guidelines and protocols machine-readable to inform Clinical Decision Support Systems used in mental healthcare. This would make the guidelines more accessible to frontline practitioners and enable the guidelines to be continuously improved in accordance with up-to-date clinical evidence.
  • In order to improve understanding of mental health conditions, NHS Digital should develop a repository using data held by NHS organisations to help researchers securely identify suitable participants for mental health research studies and assess the feasibility of research projects at early stages. Similar governance frameworks to the Scottish Health Research Register should be employed.
  • NHSX should require all healthcare providers to design interoperable systems and ensure data portability. This would allow data generated from technologies such as wearables and sensors to be transferred across platforms.

Full report: Making the right choices: Using data-driven technologies to transform mental healthcare

Data-Driven Tech in Mental Healthcare: Why is this research important?

 

 

Challenges in using data across government

National Audit Office | June 2019 | Challenges in using data across government

The National Audit Office has published Challenges in using data across government, this report sets out the National Audit Office’s experience of data across government, including initial efforts to start to address the issues. From their past work we have identified three areas where government needs to establish the pre-conditions for success: clear strategy and leadership; a coherent infrastructure for managing data; and broader enablers to safeguard and support the better use of data. In this report they consider:

  • the current data landscape across government;
  • how government needs a clear plan and leadership to improve its use of data;
  • the quality, standards and systems needed to use data effectively; and
  • wider conditions and enablers for success.

See also:

National Audit Office Challenges in using data across government [press release]

Full report Challenges in using data across government 

Summary- Challenges in using data across government 

 

A data-driven approach to cancer care

This publication brings together healthcare experts to discuss the potential of a data-driven approach to cancer care. 

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The following articles show how data are currently shaping the delivery of cancer care, how to gain the most from data that are currently available and how to maximise the potential of this data in the future:

  • Health inequalities data tell an unjust tale of two cities
  • Simple changes could improve cancer care now
  • The right data?
  • The evolution of cancer data to improve patient care
  • Accelerating research and improving patient care
  • Building a picture of patient benefit
  • How NICE can keep pace with science

Full report: A data-driven approach to cancer care | Reform | AbbVie UK