Data saves lives: reshaping health and social care with data

Data saves lives: reshaping health and social care with data (draft)
DHSC 22 June 2021

• The draft strategy sets out the Secretary of State’s vision for how data will be used to improve the health and care of the population in a safe, trusted and transparent way. It provides an overarching narrative and action plan to address the current cultural, behavioural and structural barriers in the system with the ultimate goal of having a health and care system that is underpinned by high quality, readily available data. It marks the next steps of the discussion about how we can best utilise data for the benefit of patients, service users, and the health and care system. 
• An online survey will be launched soon and final strategy published later in 2021.
• Press release: Data strategy to support delivery of patient centred care

Use of patient data - General Practice Data for Planning and Research (GPDPR) programme

Use of patient data
House of Commons Library Research Briefing 22 June 2021

• A briefing to support the adjournment debate (24 June 2021) on the use of patient data as part of NHS Digital’s General Practice Data for Planning and Research programme. The briefing outlines the General Practice Data for Planning and Research (GPDPR) programme, issues around public engagement, summarises mentions in parliament and opt out options.

Citizens’ Juries on Health Data Sharing in a Pandemic

Citizens’ Juries on Health Data Sharing in a Pandemic
NIHR ARC Greater Manchester May 2021

• Findings from three online citizens’ juries about health data sharing in a pandemic between March and May 2021. The juries each spent eight days listening to evidence and deliberating on three national data sharing initiatives which were introduced to tackle the pandemic. The juries concluded that the government was right to use emergency powers to share patient data during the Covid pandemic but greater transparency is needed.
• Press Release: ARC GM | More transparency key to public support for health data sharing, say citizens’ juries (nihr.ac.uk)

General Practice Data for Planning and Research (GPDPR)

General Practice Data for Planning and Research (GPDPR)
NHS Digital 14 May 2021

• A new way to collect GP patient medical records which supersedes the General Practice Extraction Service (GPES). In addition to replacing what GPES already does, the General Practice Data for Planning and Research service will also help to support the planning and commissioning of health and care services, the development of health and care policy, public health monitoring and interventions (including coronavirus and enable many different areas of research. This data will be shared from 1 July 2021.

Working with patients & the public to explain access to health data

Working with patients & the public to explain access to health data
Understanding patient Data, HQIP 16 March 2021

• The Understanding Health Data Access (UHDA) project is a suite of short films and written resources designed to improve accessible, introductory information to the rules and processes that govern how health and care data can be shared for research, innovation, healthcare improvement and other uses beyond individual patient care. The information in the resources introduces some of the key legal requirements for data sharing in England and Wales.

New eighth Caldicott Principle

Guidance: The Caldicott Principles
NHS England updated 8 December 2020

• A new eighth Caldicott Principle makes clear that patients and service users should be informed about how their confidential information is used. It has been developed as part of the National Data Guardian for Health and Social Care’s outcomes from the NDG’s public consultation. There will be new guidance in 2021 to define Caldicott Guardians’ roles and responsibilities and how their organisations should support them.

Rapid cardiovascular data: We need it now (and in the future)

Rapid cardiovascular data: We need it now (and in the future)
HQIP 10 September 2020

• How the collaborative approach to countering the impact of COVID-19 demonstrates the value of rapid analysis of national data in helping to improve outcomes for patients with cardiovascular disease. The National Institute for Cardiovascular Outcomes Research (NICOR) has worked with the cardiovascular professional societies and individual hospitals to ensure a continuous flow of data to assess the effect of the pandemic on patients with CVD.

Patient health records: Access, sharing and confidentiality

Patient health records: Access, sharing and confidentiality
House of Commons Research Briefing updated 14 April 2020

• House of Commons Library briefing on access to patient health records, electronic patient records, NHS data security, and the use of confidential information by the NHS.
• This paper has been updated to include relevant information on sharing patient information during the coronavirus outbreak. The Secretary of State for Health and Social Care, Matt Hancock, issued new guidance on 20 March 2020 under Regulation 3(4) of the Health Service Control of Patient Information Regulations 2002, allowing NHS England to process confidential information relating to patients if it is for a “Covid-19 Purpose and will be processed solely for that Covid-19 Purpose”. This is in force until 30 September 2020.

Requests for medical records: GDPR, personal data, data controllers and processors

Requests for medical records: GDPR, personal data, data controllers and processors
Mills & Reeve 16 October 2019

• This briefing describes a court ruling about a case concerning the extent to which a data controller, in this case a GP practice, must go to provide access to personal data.

SNOMED CT resources

SNOMED CT
FutureNHS Collaboration Platform

• SNOMED CT is a structured clinical vocabulary for use in an electronic health record. In this workspace you can access resources, designed to help staff working for CCGs and general practices to make the most of SNOMED. This area is open and accessible to anyone.

A chronological map of 308 physical and mental health conditions in the NHS

A chronological map of 308 physical and mental health conditions from 4 million individuals in the English National Health Service
Lancet Digital Health 2019; 1: e63–77, 1 June 2019

• This research aims to understand which sections of the population are susceptible to which health conditions and at which ages. It presents a lifecourse map of human health, charting the 50 most common conditions in each decade of life, and the median age at diagnosis for 308 conditions by sex and ethnicity. The results illustrate the varying dominance of different conditions through the passage of life.
•  Supplementary files include data tables of prevalence by age band, sex, and ethnicity across primary-care and secondary-care records in England.

GP IT Futures framework

Matt Hancock: shake-up of GP IT will remove outdated systems

DHSC News 28 December 2018

• A new GP IT Futures framework has been announced that has been designed to create an open, competitive market that the NHS hopes will encourage the best technology companies to invest in the NHS.

NHS Digital is working directly with GPs, Healthcare IT suppliers and IT buyers in CCGs and CSUs to learn about needs.

GP IT Futures framework
GovTech Leaders 2 January 2019

• The framework will look at how patient data will be moved to modern cloud services to allow clinicians and patients to securely access crucial, life-saving information in real time.
• The new standards, developed by NHS Digital, will introduce minimum technical requirements so systems can talk to each other securely and are continuously upgradable.

Migration to SNOMED - a Christmas guide

A Christmas guide to clinical coding
BMJ 2018;363:k5209 13 December 2018

• Read codes have been the main clinical coding system in UK primary care since the mid-1990s. The UK government recently decided that the NHS would migrate all clinical systems to use SNOMED by 2020, with primary care the first to migrate. 
• See : SNOMED CT implementation in primary care

NHS and Healthcare Data - and data driven technologies

NHS and Healthcare Data
House of Lords Briefing, 31 August 2018

• A briefing prepared in advance of a House of Lords debate on NHS and healthcare data, the Briefing describes what healthcare data is and the uses to which it might be put, challenges in using healthcare data, and the organisations involved. 
• Two emerging data-driven technologies with the potential to improve healthcare outcomes are discussed - artificial intelligence and genomics.

Data Security and Protection Toolkit

Data Security and Protection Toolkit
NHS Digital 15 May 2018

• The Data Security and Protection Toolkit is an online self-assessment tool that enables organisations to measure and publish their performance against the National Data Guardian's ten data security standards.
• All organisations that have access to NHS patient data and systems must use this toolkit to provide assurance that they are practising good data security and that personal information is handled correctly.

Data security and protection for health and care organisations

2017/18 Data Security and Protection Requirements
NHS England, NHS Improvement 30 October 2017

• This document sets out the steps all health and care organisations will be expected to take in 2017/18 to demonstrate that they are implementing the ten data security standards recommended by the National Data Guardian, and further details regarding the assurance framework for April 2018 onwards.
• From April 2018 the new Data Security and Protection Toolkit (DSP Toolkit) replaces the Information Governance Toolkit (IG Toolkit). 
• General Practices, contracted under the NHS standard GMS, PMS or APMS contract, must comply with the requirements set out in this document. Some requirements will be implemented by the commissioner of the GP IT & GP Information Governance Support Service on their behalf.
• Five key dates requiring action by health and care organisations 
• November 2017: New Data Security and Protection Toolkit replaces the Information Governance Toolkit which will be piloted with users. 
• February 2018: All organisations will have access to the new Data Security and Protection Toolkit from January 2018 to familiarise themselves with the approach to measuring implementation and compliance, including how they might apply it to their organisation from April 2018. 
• April 2018: Further guidance will be published to support organisations to use the new Data Security and Protection Toolkit. 
• April 2018: All organisations will now be required to complete the new Data Security and Protection Toolkit. 
• May 2018: The EU General Data Protection Regulation, and Security of Network and Information Systems Directive, come into force. This will increase the legislative data security and protection requirements on health and care organisations.

The non-executive director’s guide to NHS data – Hospital activity, data sets and performance

The non-executive director’s guide to NHS data – Part one: Hospital activity, data sets and performance
NHS Confederation October 2017

• This is the first of a series of briefings unpacking data across the healthcare system. 
• It is aimed at NEDs in the acute care sector and examines activity in both primary and secondary care settings and considers the role of data sharing in bringing about efficiency savings.

Changes to Data Protection legislation: CEO briefing

Changes to Data Protection legislation: why this matters TO YOU
NHS Digital July 2017

• A CEO briefing highlighting what health organisations and arms' length bodies need to consider to prepare for the EU General Data Protection Regulation (GDPR) which will apply from 25th May 2018.
• Watch here for future updates.
• See the ICO overview here.

Your Data: Better Security, Better Choice, Better Care

Your Data: Better Security, Better Choice, Better Care
DH 12 July 2017

• This report is the government’s response to the:
• National Data Guardian for Health and Care’s Review of Data Security, Consent and Opt-Outs
• public consultation on that review
• Care Quality Commission’s Review ‘Safe Data, Safe Care’
• Actions include putting the National Data Guardian’s position on a statutory footing, with stronger sanctions to protect anonymised data, including severe penalties for negligent or deliberate re-identification of individuals.
• It also announces plans to:
• give patients and the public more access to, and control over, their personal data
• build confidence in the importance of secure data to provide better individual care and treatment
• support research and planning across the health system
• See also National Data Guardian statement on government response to the NDG Review

From Healthcare to Homecare: the critical role of 5G in healthcare transformation

From Healthcare to Homecare: The critical role of 5G in healthcare transformation
Ericsson Consumer Insight Summary Report, May 2017

• This report explores the transformation promised by information technology, and the critical role of 5G, across three healthcare situations: preventative, routine and post-operative care.
• The report presents insights from an online survey of 4,500 advanced smartphone/mobile broadband users aged 18–69, an online survey of 900 decision makers across 6 industries – healthcare, insurance, medical technology companies, telecom operators, app developers/aggregators and government regulatory bodies, consumer focus group discussions in the US and the UK, plus in-depth interviews.
• Key findings:
• Healthcare becomes decentralised, moving from hospitals towards homes
• Patient data is centralised, turning hospitals into data centres
• Increasing dependence on wearables and remote treatments makes 5G essential to provide reliable and secure services