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.

Understanding Health Data Access - HQIP

Understanding Health Data Access
HQIP

• The Understanding Health Data Access (UHDA) project is a suite of resources designed to improve accessible, introductory information to rules and processes surrounding how health and care data can be shared for research, innovation, healthcare improvement and other uses beyond individual patient care. It provides
• an overview of how to design projects which both protect patient privacy and meet legal requirements
• an understanding of how to construct data applications clearly, thereby improving the chances of success and reducing the risk of avoidable delays.

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.

Evidence-informed health care policy and practice: using record linkage to uncover new knowledge.

Evidence-informed health care policy and practice: using record linkage to uncover new knowledge. [Essay]
J Health Serv Res Policy. 2021 Jan;26(1):62-67. doi: 10.1177/1355819620919793. Epub 2020 Apr 23

• We illustrate the benefits of linking information from disparate administrative data collections, uncovering new knowledge, and influencing health policy or clinical practice, or both.

Impact of providing patients access to electronic health records on quality and safety of care

Impact of providing patients access to electronic health records on quality and safety of care: a systematic review and meta-analysis
BMJ Quality & Safety 19 November 2020;29:1019-1032.

• A systematic review identified 20 studies (17 387 participants) which evaluate the impact of sharing electronic health records (EHRs) with patients and map it across six domains of quality of care. Analysis supports that sharing EHRs with patients is effective in reducing HbA1c levels, a major predictor of mortality in type 2 diabetes and could improve patient safety.

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.

Remote symptom monitoring integrated into electronic health records: A systematic review

Remote symptom monitoring integrated into electronic health records: A systematic review
Journal of the American Medical Informatics Association, ocaa177, 23 September 2020 https://doi.org/10.1093/jamia/ocaa177

• A systematic review identified 12 studies reporting 10 electronic health record-integrated remote symptom monitoring systems which remotely collect patient-reported symptoms, but found limited evidence that this improves care and outcomes.

Confidence in a crisis? Building public trust in a contact tracing app

Confidence in a crisis? Building public trust in a contact tracing app
Ada Lovelace Institute August 2020

• Outcome of a rapid online discussion convened by Ada Lovelace Institute, Traverse, Involve and Bang the Table with 28 members of the public – the ‘Lockdown Debate’ – to explore attitudes to the use of COVID-19 related technologies for transitioning out of lockdown. The cohort was asked:
• ‘Under what circumstances do citizens think that technological solutions like the COVID-19 contact tracing app are appropriate?’ The four resulting themes:

1. Provide the public with a transparent evidence base.
2. Offer independent assessment and review of the technology.
3. Clarify boundaries on data use, rights and responsibilities.
4. Proactively address the needs of, and risks relating to, vulnerable groups.

• The report presents a checklist for the Government, policymakers and tech developers to support design and delivery of COVID-19 technologies with public legitimacy built in.

Covid-19 and lack of linked datasets for care homes

Covid-19 and lack of linked datasets for care homes
BMJ 2020; 369:m2463 doi: https://doi.org/10.1136/bmj.m2463 (24 June 2020)
The covid-19 pandemic has placed a spotlight on how little is known about the care home sector, and the lack of easily accessible, aggregated data on the UK care home population.

• The editorial describes work at Newcastle University to design, develop, and implement a minimum dataset for UK care homes such as that developed in the US for the Centers for Medicare and Medicaid Services.

Evidence-informed health care policy and practice: using record linkage to uncover new knowledge.

Evidence-informed health care policy and practice: using record linkage to uncover new knowledge.
Journal of Health Services Research & Policy, 23 April 2020 https://doi.org/10.1177/1355819620919793 (Not available through NHS OpenAthens)

• A discussion of the key strengths and limitations of using record linkage as the basis of an evidentiary approach for improved health services, and for conducting health services research. 

Abstract

Mental health apps - MaST

Special Report: patient-facing apps to support mental health interventions
Digital Health October 2019

• This report describes the Management and Supervision Tool (MaST), developed by Otsuka Health Solutions for Mersey Care Foundation Trust. MaST analyses data from the electronic patient record and uses an algorithm to determine how likely a patient is to use crisis services in the next 28 days. MaST overlays existing electronic health record and business information tools, extracting data overnight from the EPR and so presenting an up-to-date assessment each day. Launched in April there has been an increase in teams that are discharging people back to GP who are using MaST, and a reduction in the re-referrals.

Design principles for digital health

Design principles for digital health
Digital Healthcare Council 11 October 2019

• This paper outlines four key principles that are essential to create a vibrant and sustainable digital health ecosystem that works for patients - People first, Fair system rules, Free and open information and Evidence based practice.

Harnessing data and technology for public health: five challenges

Harnessing data and technology for public health: five challenges. Responding to the government’s prevention green paper
Health Foundation 8 October 2019

• In response to the governments prevention green paper - Advancing our health: prevention in the 2020s., this long read sets five challenges that the government needs to address if it is to harness the full potential of data and technology in public health, and offer a suggestion to help address each.
• The challenges are:
• balancing interventions that reduce individual susceptibility versus interventions that tackle the underlying causes
• balancing universal interventions against targeted approaches
• making prevention services accessible to those who need them most
• closing the evidence gap between prediction and prevention
• balancing investment in novel solutions against funding tried-and-tested solutions.

Getting involved with GP Connect

Getting involved with GP Connect
NHS Digital 19 August 2019

• NHS Digital are supporting partnerships of health and care organisations and software suppliers to develop products that can use the data made available by the GP Connect APIs. 
• GP Connect APIs can only be used legally for direct patient care, not for planning or research.
• NHS Digital have developed a process for GP Connect onboarding, and a First of Type process for commissioning or end user organisations.

Realising the value of healthcare data

Realising the value of health care data: a framework for the future
Ernst & Young 2019

• This report sets out a framework for the efficient and ethical use of NHS data and discusses its economic value to the NHS.
• It proposes two primary approaches to quantifying the value of data:
• A market-based approach, calculating the implied “per record” valuation multiples of comparable data assets or valuation multiples of companies with significant patient data assets
• An income-based approach, which quantifies value based on the economic benefit to be generated from the curated data set.
• "The health ecosystem is made up of multiple types of real-world data (patient-, population- and organisation-level data). Moving from siloed raw data to structured patient-level data generates unique data sets curated over time and captures longitudinal patient data combining long-term health or medical records with episodic periods of treatment. These can be analyses to generate insights and provide value to patients, providers, payers, pharmaceutical companies and the wider economy as a whole."

NICE data and analytics statement of intent [consultation]

NICE data and analytics statement of intent
NICE consultation 13 June - 13 September 2019

• NICE is looking to extend the use of data that will help inform its independent committees who produce its guidance. They are proposing to extend its use of data, from sources including:
• audits of procedures such as operations
• registries which collect data on how particular treatments are used
• surveys of people using services
• data collected on national trends, such as how many people have a condition.
• Statement of intent outlines when and why should broader types of data be considered.

NHSX

NHSX

4 April 2019

Highlights from Matt Hancock's speech at The Royal Society of Medicine event 'Medical apps: mainstreaming innovation'. We must drive tech innovation and improvement across the NHS  and DHSC News item NHSX: digital experts will be part of cancer and mental health teams

• NHSX is a new specialist unit that brings together tech leadership from the DHSC, NHS England and NHSI into one place. Setting national policy for NHS tech, digital and data and standards that work across the whole of health and care.
• NHSX will be led by the government’s digital policy chief, Matthew Gould, and become operational in July. In the interim it will be led by a senior team from NHS England and the Department of Health and Social Care.
• NHSX will have 3 early priorities:
• ensuring tech saves time for staff so they can focus on patients.
• giving patients the tools to access information and services directly.
• creating a system that means patient information can be accessed, safely and reliably, wherever it is needed.
• From July, NHSX will mandate the use of internationally recognised technology and data standards across the NHS to ensure all systems can talk to each other.
• To test a new way of working, tech experts from NHSX will be embedded in national cancer, mental health and urgent care teams to bring the benefits of modern technology to every patient, clinician, and carer.
• The digital experts will support NHS England's cancer and mental health national policy teams in:
  
  • making it easier for patients to access services through smartphones
  • giving clinicians access to the relevant diagnostic information about a patient
  • making it easier to collect and use health data which can benefit research and patients

NHS Digital Board paper on development of digital and technology themes for the NHS LTP

Update on the Development of the NHS Long-Term Plan and progress to develop a new strategy for NHS Digital
NHS Digital Board meeting 18 December 2018
Extract: (p56)

"Expected digital and technology themes NHS Long Term Plan

• Although at the time of writing the Long-Term Plan has not yet published, we anticipate that there will be a number of proposals relating to digital and technology that will support new models of health and care.
• We expect that the plan will set out a number of priorities with particular relevance for NHS Digital: 
• Continued focus on empowering the patient with digital tools to support prevention, to accelerate channel choices and to support self-management of conditions. 
• Continued focus on digital enablement of pathways including maternity, mental health, diabetes, child and adolescent, and end of life care.
• Digital offers for primary care will be promoted. 
• The acceleration of the roll out of Local Health and Care Record Exemplars will support several Integrated Care Systems, population health management and streamlining patient pathways.
• The continued focus on the roll out of Electronic Medical Record (EMR) systems. 
• A focus on research and innovation through the use of data, in keeping with the goals of the Life Sciences and Industrial Strategy Sector deal published last week."

A data driven approach to personalised cancer care

A data driven approach to personalised cancer care
Reform 26 October 2018

• This report considers how a better collection and use of data can significantly improve cancer outcomes. 
• The new model of cancer care proposed in this paper looks at how data could be examined and used at every stage of the treatment journey, from prevention and diagnosis through to treatment and recovery. Making better use of data will not only improve cancer outcomes but will also enable the NHS to manage the disease far more effectively, now, and in the future. 
• This paper is sponsored by AbbVie.

NHS and social care data: off-shoring and the use of public cloud services

NHS and social care data: off-shoring and the use of public cloud services
NHS Digital September 2018

• National guidance has been published setting clear expectations for health and care organisations who want to use cloud services or data offshoring to store patient information.
• The following documents have been created by NHS Digital to provide more detailed guidance: 
• Open the health and social care cloud security good practice guide.
• Open the health and social care cloud risk framework.
• Open the health and social care data risk model.
• Open the health and social care cloud security - one page overview.