Advancing the analytical capability of the NHS and its ICS partners

Advancing the analytical capability of the NHS and its ICS partners
The Strategy Unit October 2021

• This report describes how analysts, teams, regions and national bodies can:
• organise themselves to deliver strategic analysis;
• develop their analytical skills and provide opportunities to simplify career pathways for analysts;
• appreciate and utilise the full range of analytical possibilities at their disposal; and
• connect with peers through networks.

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

• This 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

Development of a data utility framework to support effective health data curation

Development of a data utility framework to support effective health data curation
BMJ Health & Care Informatics 2021;28:e100303. doi: 10.1136/bmjhci-2020-100303

• This paper from researchers at Health Data Research UK, presents a method for generating and involving the user community in developing a proposed framework for evaluation and communication of healthcare dataset utility for given research areas.

Covid 19: supporting the vulnerable during lockdown

Covid 19: supporting the vulnerable during lockdown
Public Accounts Committee 21 April 2021

• In its report published today the Public Accounts Committee says the Government’s “quickly drawn up”, centrally-directed scheme to support those most vulnerable to covid-19 disease who were instructed to “shield” at home “suffered from the problems of poor data and a lack of joined up systems that we see all too often in government programmes”.

Putting Good into Practice: A public dialogue on making public benefit assessments when using health and care data

Putting Good into Practice: A public dialogue on making public benefit assessments when using health and care data
National Data Guardian 14 April 2021

• This report details the findings of a dialogue with more than 100 members of the public about how to make sure that health and care data is used in ways that benefit people and society.

Linked electronic health records for research on a nationwide cohort of more than 54 million people in England: data resource

Linked electronic health records for research on a nationwide cohort of more than 54 million people in England: data resource
BMJ 2021; 373 :n826 doi:10.1136/bmj.n826

• This paper describes use of NHS Digital Trusted Research Environment (TRE) for England, a novel England-wide electronic health record (EHR) resource, to enable whole population research on covid-19, exemplar cardiovascular conditions (incident stroke or transient ischaemic attack and incident myocardial infarction) and all cause mortality between 1 January and 31 October 2020.

The COVID decade: understanding the long-term societal impacts of COVID-19

The COVID decade: understanding the long-term societal impacts of COVID-19
British Academy 23 March 2021

• This report argues that the societal impacts of the pandemic have exposed several gaps in public policy-making that the government now has the opportunity to address. It suggests seven strategic goals for policy-makers to pursue: build multi-level governance; improve knowledge, data and information linkage and sharing; prioritise digital infrastructure; reimagine urban spaces; create an agile education and training system; strengthen community-led social infrastructure; and promote a shared social purpose.

The UK response to covid-19: use of scientific advice

The UK response to covid-19: use of scientific advice
House of Commons Science and Technology Committee 8 January 2021

• This Report considers the ways in which the Government has obtained and made use of scientific advice during the pandemic to date. IT includes how scientific decision making structures evolved, initial awareness of the novel coronavirus and operation of SAGE, and finally examines instances that exemplify how effectively science advice was used. One of the conclusions is that a fully effective response was hampered by lack of data, and fragmentation of data across public organisations.

National Cancer Registration and Analysis Service: data users and partners

National Cancer Registration and Analysis Service: data users and partners
PHE 15 December 2020

• Guidance for all users of National Cancer Registration data on how to appropriately acknowledge use of the data on all outputs

Digital Health and COVID-19: A PRSB Consultation

Digital Health and COVID-19 A PRSB Consultation
Professional Record Standards Body 30 November 2020

• An examination of the digital transformation of health and care services during the pandemic and recommends how the system can use the lessons from COVID-19 to advance digital change, while maintaining safety and prioritising citizen’s needs. 
• The recommendations include building on the enthusiasm for digital but reviewing and evaluating safety implications, particularly for remote and virtual consultation where both clinical risk and patient access need to be addressed. The report also includes a focus on quality in practice, including the use of apps and other digital technologies. Members told us that better coordination of data collections in health and care are needed to reduce burden on frontline professionals.
•  Based on consultation with more than 100 PRSB members and partners. 

Citizen generated data and health Predictive prevention of disease

Citizen generated data and health: Predictive prevention of disease
PHG Foundation November 2020

• Citizen generated data (CGD) is a form of data generated by citizens outside formal health systems that can nevertheless provide insights into health and wellbeing, and that could potentially be harnessed for disease monitoring and treatment. The depth and variety of CGD covers the full spectrum of the health sector, from public health and social care to primary and hospital-based care. We outline essential policy considerations in order to support the development of cooperative strategies for optimising the future use of CGD for predictive prevention.

The data will see you now: Datafication and the boundaries of health

The data will see you now: Datafication and the boundaries of health
Ada Lovelace Institute October 2020

• This report explores the datafication of health: what it is, how it occurs, and its impacts on individual and social wellbeing. It draws on examples to synthesise existing research, analyse concepts and surface the societal and ethical challenges arising from the blurring of the boundaries of health data.

Health Data Innovation Research Gateway

Health Data Innovation Research Gateway

• The Health Data Research Innovation Gateway (the ‘Gateway’) provides a common entry point to discover and enquire about access to UK health datasets for research and innovation. It provides detailed information about the datasets, which are held by members of the UK Health Data Research Alliance, such as a description, size of the population, and the legal basis for access.
• The Gateway includes the ability to search for research projects, publications and health data tools, such as those related to COVID-19. New interactive features provide a community forum for researchers to collaborate and connect and the ability to add research projects.

Helping tackle loneliness through open data on local services

Helping tackle loneliness through open data on local services
LGA , Dept Digital Culture Media and Sport, July 2020

• The report describes pilot work to tackle loneliness and agree ways of gathering and sharing services data openly.  The "Open Referral UK" data standard was used to collect data which was shared in a standardised format, such that hyperlocal services can be identified based on someone’s location and personal circumstances.
• The work to-date (processes, tools, data standards) has been sufficiently generic to be applicable to any local services, not just those helpful to combating loneliness. In future, it is hoped all local services will be published more openly and consistently for easy discovery and take-up.
• A specification and standard for the published data was documented and an exemplar app was developed to show the principles of data discovery. Links to early published data sets is offered for trial use drawn from the work of the participating councils and their suppliers and through wider links to other data sources

System C’s CarePlus child health information system

System C’s CarePlus child health information system in Merseyside
DigitalHealth 30 July 2020

• A single child health information system has been rolled out across in Liverpool and Sefton, bringing together the health records of more than 350,000 children. Care professionals in the area will be able to track children from childhood through to their transition to adult services and will have access to all the relevant information to provide suitable care.

Missing Numbers in Children's Services

Missing Numbers in Children's Services
NESTA 23 July 2020

• This report written by Institute for Government (IfG) in partnership with Nesta explores what data is available on children’s centres and youth services, and how government might overcome the barriers they face improving this data.

Social Care Data Collection for Pandemic Planning and Researc

Social Care Data Collection for Pandemic Planning and Research [Press release]
NHS Digital 15 July 2020

• The Social Care Data Collection for Pandemic Planning and Research will collect existing, anonymised data on the COVID-19 status of care givers and care receivers directly from IT systems. The collection will show trends within care settings at a local and national level which will support forecasting of future waves of the pandemic. It will be used to inform research, to plan better services, to deliver better value for money and to improve the quality of individual care. 

No green lights, no red lines Public perspectives on COVID-19 technologies

No green lights, no red lines Public perspectives on COVID-19 technologies
ADA Lovelace Institute July 2020

• In this report, we articulate lessons from public engagement to assist Government and policymakers navigating difficult dilemmas when deploying data-driven technologies to manage the pandemic, and when judging what risks are acceptable to incur for the sake of greater public health.
• Public perspectives on technologies that monitor people and health. Five themes are highlighted identity, accuracy, discrimination and accessibility, effectiveness and proportionality, and trust in the system.
• The report includes considerations for policymakers and technology developers.

The Oxford Royal College of General Practitioners Clinical Informatics Digital (ORCHID) Hub

The Oxford Royal College of General Practitioners Clinical Informatics Digital Hub: Protocol to Develop Extended COVID-19 Surveillance and Trial Platforms.
JMIR Public Health Surveill. 2020;6(3):e19773. 2 July 2020. doi:10.2196/19773

• The aim of this protocol is to describe the rapid design and development of the Oxford Royal College of General Practitioners Clinical Informatics Digital Hub (ORCHID) and its first two platforms. The Surveillance Platform will provide extended primary care surveillance, while the Trials Platform is a streamlined clinical trials platform that will be integrated into routine primary care practice. 
• ORCHID will provide equitable and innovative use of big data through a professionally led national primary care network and the application of FAIR (Findable, Accessible, Interoperable, and Reusable) metadata principles.

Trusted Research Environment service for England

Trusted Research Environment service for England
NHS Digital 

• NHS Digital’s Trusted Research Environment (TRE) service for England provides approved researchers with access to essential linked, de-identified health data to quickly answer COVID-19 related research questions.