Digital Child Health and MaternityUpdate Briefing – 15 May 2017

Agenda

14:00 – 14:30 Digital Child Health overview

14:30 – 15:15 Child Health Information Standard and Events Catalogue

15:15 – 15:30 Break

15:30 – 16:00 Alpha phase

16:00 – 16:30 Maternity

16:30 – 17:00 Questions

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Digital Child Health – National overview

Presented by Thomas Burnett

Digital Child Health Programme Manager

Background to programmes

Healthy Children: Transforming Child Health Information, a

strategy commissioned by NHS England September 2015, delivered

July 2016, published November 2016.

NHS Digital work began July 2016 (Discovery)

Maternity Transformation Programme, formed on the back of the

National Maternity Review (Feb 2016). 9 Workstreams, 2 dedicated

to information services and technology.

NHS Digital handed remit for a Discovery period for Workstream 7:

Harnessing Digital Technology in September 2016.

Healthy Children – strategy vision

‘Knowing where every child is and how

healthy they are’

‘Appropriate access to information for all

involved in the care of children’

A number of current challenges

National Personal Child Health Record (PCHR) still on paper

Limited capability to manage children unregistered to GPs and offer them

preventative services

Deficiencies in managing local populations highlighted by National Incident

Team report, children at risk of missing out on preventative services

Healthcare professionals don’t have access to a core summary of child health

information, records are fragmented across systems

Services still very paper driven and manually intensive

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Public Health

EnglandP

ers

onal H

ealth

Pro

fessio

nal H

ealth

Public

Health Commissioners

Directors of Public

Health & Children’s

Services

Delivery of Healthy Child

Programme

(All Children)

Delivery of all other care services

(Some Children)

CHIS /

CHRD

CHIS /

CHRD

CHIS /

CHRD

CHIS /

CHRD

CHIS /

CHRDCHIS /

CHRD

School NursingPrimary CareHealth VisitingMidwifery

Education ServicesVoluntary ServicesMental Health

Services

Emergency &

Acute Services

Justice ServicesSocial ServicesCommunity

ServicesNeonatal Services

Maternity

Information Systems

Screening

Information Systems

Primary Care

Systems

GPESCYP DatasetCAMHs

Dataset

PCHR

90

CHRDs

Research & Policy

Maternity

Dataset

SCR

National Audit

Healthy Children – where do we start?

With the basic building blocks:

• A first layer of essential child health information for exchange

• A first phase of systems exchanging that information - Maternity, Child Health

GP systems and Personal Child Health Records

• A roadmap for growing the scope and sophistication of the information

exchange

• Adding in new services as they become available, for example, national

Failsafe for Healthy Child Programme

How it works

Primary Care

MaternityHealth Visitors

0-5

Child Health

Records School Nursing

5-19

National

Screening

Services

ePCHRNational Events

Management Service

National

Failsafe

Management

Service

Hub

Registration

Authority

Events

Design

Authority

Citizen

Identity

Relationship

Management

Public Health

Other New

Services

Regional support

Primary Care

Maternity

Health Visitors

0-5

Child Health

Records

National

Screening

Services

ePCHR

Public Health

National Events

Management Service

National

Failsafe

Management

Service

Hub

Registration

Authority

Events

Design

Authority

Citizen

Identity

Relationship

Management

Integrated

Digital care

Record

School Nursing

5-19

Local

eP(C)HR

Local Events

Management

Service Local Failsafe

Management

Service

Timeline touch points

2017/18 2018/19 2019/20

Key Event

Go Live date

NEMS and FPM Beta

complete

Programme Business

Case approved by

TDIB

NEMS & FPM

Business Case

Development

Complete

NFMS Business

Case

Development

Complete

NEMS

and FPM

Alpha

complete

NFMS Alpha

complete

NFMS pilot completeEvents

Catalogue

published

by PRSB

ISN

Interoperabi

lity and

FPM

Published

NEMS and

FPM pilot

complete

NEMS used by the

first organisations to

share data from the

events catalogue

ePCHR available to

first Parents/Carers/

Children with national

health record access

NFMS Beta

complete Events Catalogue

development

complete

NFMS used by the first

organisations to get

failsafe alerts

ISN for Failsafe

Published

Implementing the

Strategy

Philip M.J. Graham

Health Informatics Programme Director

Blackpool Teaching Hospitals

Where were

we?

Tech UK – Dec 2016

Tech UK – Dec 2016

Tech UK – Dec 2016

Tech UK – Dec 2016

Tech UK – Dec 2016

Maternity

Systems

GP

Systems Community

Systems

CHIS

National

Screening

Systems

Registration

SCR/PDS

Local IDCR /

Interface

Local

Access

Management

Health

National

Partner

Personal

Local failsafe

management

Where are we

now?

STP Programme Mandate(Events Model)

What next?

What next?

• Governance

• Build on the infrastructure

• Implement the phases

• In partnership

• To implement the Strategy

Maternity

Systems

GP

Systems Community

Systems

CHIS

Education

Systems

ePHR

National

Screening

Systems

Local

Authority

Systems

Failsafe

Management

Registration

SCR/PDS

Local IDCR

Access

Management

Commissioning

Population

Management

National events hub

Local events hub

Health

National

Partner

Personal

LPRES

Strategy

Care Pathway

Supported phases

Current

Design

Governance

Events Catalogue

Presented by Silas Collinge

Lead Business Analyst

We will cover

• Event definition

• Event content

• Professional Records Standards Body (PRSB) consultation

• Timelines

Where did it all start?

The strategy:

“Parents, families and carers will have an online record of their child’s health and development”“Professionals will have access to a core view of child health information at the point of care”

But where do you start? How do you define a Core View?• Maternity Dataset v1.0 and Children and Young Persons• PCHR (Personal Child Health Record)• OBS 2015

NHS Digital created the starting point around the events that should be exchanged for Professional, Personal and Public Health

Digital Child Health approach to events

• Something happens in the life of a child

• It may or may not be in the Healthy Child Programme or recorded in

the Red Book

• We call this a clinical intervention or occurrence

A visit to the GP

Newborn Infant Physical

Examination

Birth Writing a comment

in the child’s ePCHR

MMR immunisation

Digital Child Health approach to events

• Once this clinical intervention or occurrence has happened any number

of events are produced

• These are published to the National Events Management Service (NEMS)

HCP Clinical Intervention: Newborn

Physical Examination

Referral

Measurement

Physical Examination:NIPE

A Newborn physical examination

is performed – this is the clinical

intervention

After the clinical intervention a series of

events may be triggered

Digital Child Health approach to events

Professional, Personal and Public Health will be able to see the events

in the events catalogue

A GP may want to see

to all events relating to

all children under their

care

Public Health may only want to see certain events such as ‘measurements’ or ‘immunisations’

Parents may want to

see all events relating

to their child

Example event contents

Birth Details

Measurements

What is an events catalogue?

• One document containing all ‘events’ based on the Healthy Child

Programme and the scope of the PCHR

• Gives enough information for all involved in the care of children to

understand the strategic direction, the current ways of working and data

flows

• Contains all clinical and non clinical data items broken down into each

event

• In future will allow public, professionals and personal health to decide

which events they want to send/share/publish and what events they want

to ingest/view/subscribe to

• The document will be iterative and future work will continue into the

Maternity and National Failsafe work

PRSB consultation

• Scope split down into 3 packages to be consulted upon covering all elements

of the PCHR and Healthy Child Programme

• 3 large consultations planned with health professionals, parents, public

health and suppliers with over 70 people attending

• NHS Digital provided the starting point of what information should be

exchanged

• Gain agreement on what clinical data items should be shared across

professional, personal and public health

• PRSB to gain sign off from Academy of Royal Colleges for a Community

Child Health Record structure and where each data item sits within the

record

PRSB consultation

PRSB consultation

Timelines

• Draft FHIR resources for Package 1 online now (feedback welcome!)

• Alpha design phase has begun on NEMS (collaboration welcome!)

• Package 2 and 3 consultation in June and July

• Events catalogue to be finalised by October and shared via GitHub

alongside draft FHIR resources

• ISN to be released in February 2018

FHIR profiles

Presented by Dave Barnet

Interoperability Lead

Interoperability uses

Resources

http://hl7.org/fhir/DSTU2/resourcelist.html

Resources

Patient

Practitioner

Diagnostic

Report

Observation

Profiles

• Profiles are resources that have been constrained for a use case

– Cardinality

– Optionality

– Terminology

– Extension

Birth details Location

Related person

Procedure

Observation

Conditions

Observations

Referral

Bundle example

DCH-BirthDetailsEvent-Bundle-1This 'DCH-BirthDetailsEvent-Bundle-1' Bundle resource profile is used as a container to collect a combination of the following resources, as ordered below, to fulfil the information requirements of a Birth Details Event:

• DCH-BirthDetailsEvent-MessageHeader-1

• CareConnect-DCH-BirthOccurrence-Encounter-1

• CareConnect-Organization-1

• CareConnect-DCH-Baby-Patient-1

• CareConnect-DCH-LengthOfPregnancy-Observation-1

• CareConnect-DCH-NumberOfFetusesInConfinement-Observation-1

• CareConnect-DCH-ActualDeliveryPlace-Organization-1

• CareConnect-DCH-ProblemsInBirth-Condition-1

• CareConnect-DCH-AbnormalitiesDetected-Condition-1

• CareConnect-DCH-ProblemsInPregnancy-Condition-1

• CareConnect-DCH-TypeOfDelivery-Procedure-1

• CareConnect-DCH-Delivery-Encounter-1

• CareConnect-DCH-Mother-Patient-1

• DCH-MotherAndBaby-RelatedPerson-1

• CareConnect-Location-1

Bundle example

MessageHeader

Encounter

PatientResponsible

OrganisationHealthcare

ProfessionalLocation

Service

Provider

Observation(Length of pregnancy)

Procedure(Type of delivery)

Observation(Foetuses in confinement)

Related

PersonMother

Bundle example

Bundle example

Bundle example

Alpha ways of working

Break

Alpha works overview

Presented by David Nevill

Senior Project Manager, Digital Child Health

Alpha scope

• Who’s here

• What we’ve done so far

• What next?

• What are the risks / dependencies?

• How can you engage?

What we’ve done so far

Alpha Scope Definition

Strategic Alignment

Verifying the Use Cases

Delivery Alignment

When What

Early

2017• Ongoing Strategic Alignment

• Architecture / conceptual

exploration

• Project Scope clarification

April • Through the DDC “Front Door”,

tactical alignment, planning

• Defining a manageable Alpha

scope

• Approach to requirements

management

• Defining ways of working as part

of the Digital Interoperability

Platform agenda

Realigning the Alpha scope

• National Events Management Service (NEMS)

• National Failsafe Management Service (NFMS)

– Limited short term scope: child population

tracking of contact with health services:

Child Health Record Department

Health Visiting Service

Primary Care Service (GP)

School Nursing Service

– Longer term scope – Full failsafe management

Verifying and elaborating use cases

dfd Birth Notification DFD

Midwife

Search for

Mother

Maternity System

Maternity System

(Non PDS)

PDS

Find Mother's

NHS Number

Birth Notification

Application

Enter Birth

Details

Send Child's

NHS Number

Link Mother to

Baby

Submit Birth

Notification

CHIS

ONS

Registrars Online

National

Screening Store

Create Child's

NHS Number

Child's NHS

Number

Mother's Details

Mother's Details

Mother's Details

Mother's Details

Mother's NHS Number

Mother's Details

Mother's NHS Number

Mother's NHS Number

Birth Notification

Birth Notification

Birth Details

Child's NHS

Number

Child's NHS

Number

Birth Details

Child's NHS

Number

Birth Notification

Birth Notification

Child's NHS

Number

Birth Notification

Birth Details

Birth Details

Birth Details

Child's NHS

Number

Birth Details

dfd Vitamin K DFD

Midwife

Maternity System

Vitamin Kadministered

PCHR

CHRDVitamin K

Admin

CHIS

Further Doses(Oral)

GP

Health Visitor

AdditionalVitamin K

doses

Health VisitingSystem

GP

Administration DetailsFlimsy

Administration Details

Notified of additional doses

Administration Details

Vitamin K consent

AdministrationDetails

Administration Details

Administration Details

Notified of additional doses

Administration Details

AdministrationDetails

Administration Details

• Ensuring NEMS / NFMS requirements

align with events

• Data flows (publishers and subscribers)

for events in scope elaborated

• Building a solution as agnostic as we can

of the Business system / organisational

model to make it more sustainable

dfd Vitamin K DFD

Midwife

Maternity System

Vitamin Kadministered

PCHR

CHRDVitamin K

Admin

CHIS

Further Doses(Oral)

GP

Health Visitor

AdditionalVitamin K

doses

Health VisitingSystem

GP

Administration DetailsFlimsy

Administration Details

Notified of additional doses

Administration Details

Vitamin K consent

AdministrationDetails

Administration Details

Administration Details

Notified of additional doses

Administration Details

AdministrationDetails

Administration Details

Alpha timeline – what next?

When What

May • Requirement Elaboration

• Resource Allocation and prep for Sprint #1

June • Development

• Ongoing Requirement Elaboration

• User Research / Service Design (in parallel /

collaboration)

July – Sept • Iterating the above

October • Refinement / consolidation

November • Alpha Closure – checkpoint

• Prepare for Beta

Engage Users

Manage Expectation

Articulate the direction

Get feedback

ONGOING…

Engage Suppliers

Strategic Alignment

Transparency

What next - Healthy Child events in early scope

• Birth Notification

• Bloodspot

• 8-week immunisations

• HPV

• Population failsafe

Pattern 1

Pattern 2

Pattern 3

Pattern 4

Pattern 5

Failsafe

?

Original Alpha Scope Possible Updated Approach

Alpha ways of working

• Following the Government

Service Design Manual.

• Where applications are stood

up to explore an issue, these

will be made available for

experimentation, with test

data.

Alpha ways of working

• All latest developments

available through GitHub

• All discussions,

communications and

points of view contributed

by suppliers and users will

be openly available online

Alpha outputs

• One or more prototype(s)

• Documented evaluations of the prototypes from

business and technical viewpoints

• A recommendation of which approach is the best,

viable option to progress to beta phase

• Documented design of the best viable option, in

sufficient detail to support approvals by architecture

governance

What are our risks and dependencies?

• It’s part of a wider Digital Interoperability Platform

• The strategy encourages local equivalents (still aligning

to national standards)

• Ongoing feasibility and viability

• Citizen Identity dependency (and wider P2020 agenda)

Invitation for involvement in Alpha

• Opportunity for supplier and user communities to become

involved to both influence and learn

• Seeking different levels of involvement

• Open to the all supplier and user communities

• No financial support to suppliers or users to become

involved in Alpha

• If a future procurement is authorised a notice will be

published advising all strategic suppliers that a

procurement has commenced. Consequently there will be

no impact resulting from participation in the Alpha

Levels of involvement in Alpha

• Doers - suppliers and users who are willing to get their hands

dirty trying out aspects of the Alpha work

• Thinkers – suppliers and users who are willing to publically offer

views, advice or critiques

• Watchers – suppliers and users who just want to follow progress

Request for user involvement

• GPs

• Health Visitors

• School Nurses

• Other interested Health professionals

• Supplier user groups

dch@nhs.net

For more information

• Email:

– dch@nhs.net

• GitHub:

– https://github.com/DigitalChildHealth/Discovery-Alpha

• Health Developer Network:

– https://developer.nhs.uk/downloads-data/digital-child-health-fhir/

Supporting women, helping professionals

Harnessing digital technology in maternity transformation

Presented by Helen Harger

Senior Clinical Product Manager

What are we trying to help with?

• Numbers of births are increasing

• A changing profile in users of maternity services

• Changes in service usage and access

• Increasing demand for personalisation of care

• Wide variation in maternity pathways and their

effectiveness

• Recognition of a lack of access to mental health

services

• Missed opportunities relating to still birth and

appropriate interventions

Digital challenge

• Cultural reliance on paper notes, digital often used only for booking

and hospital care around birth and the early post-natal period

• Few building blocks for digital innovation, e.g. legacy maternity

systems, limited mobile working, variance in digital maturity

• Lack of reliable information reflecting national UK care provision and

consistency of access to national guidance on birth and care choices

for women

• No standards or core dataset for interoperable maternity systems

• Women-held maternity notes still on paper

• Time to administrate paper/technology interface is impacting time to

care

Three things

Digital tool Initially, an app to improve personalisation and choice by enabling access to

unbiased, evidence based and locally specific information about their own

circumstances, choices available and their own personal care plans

Behind the scenes ‘machinery’. Replacing paper processes with point-of-care

accessible electronic maternity records. The enabler for consistent capture

and movement of maternity pathway information between and within local

maternity systems, professionals and with women

Standards &

interoperability

Digital

maturity

Making life easier through appropriate adoption and uptake of technology.

Create a supportive framework for growing digital maturity and capability in

maternity services

>

>

>

Problems and priorities for professionals

73National Maternity Transformation Stakeholder Survey for WS 7 - Oct-Feb

Getting it right for women

What are the 3 biggest complaints you hear from women receiving

your care?

Poor Support/Communication

Lack of continuity of care

Delayed Care

Not enough time with HCPs

Lack of consistent advice/info

Having to repeat their history

Poor Accessibility

Too much Admin

Other

Technology should never be the entire solution… but can play a huge part

National Maternity

Transformation

Stakeholder Survey

for WS 7 - Oct-Feb

A record: standards and interoperability

• Standards needed to bring together the

multitude of supplier systems in use

across and within local maternity

systems

• Create a safe continuity of care and

‘continuity of carer’ approach whilst

maintaining choice

Improved choice for women:

example

Provider 1: antenatal

Provider 2: intrapartum

Provider 3: postnatal

• Enabling ‘capture once, re-use many’

What’s next?

Share your views

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