This document outlines an agenda and presentation for a meeting on developing a digital strategy for child health information systems in England. The meeting will include introductions, a discussion of the strategic context and why a digital strategy is needed now. Presentations will cover the challenges with the current fragmented systems, a vision for a shared core clinical record and digital health hub, and options and a timeline for implementation. The goal is to simplify and standardize child health information so it can be accessed and updated in a consolidated way by parents, professionals and the public health system.

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Making a
Real
Difference
to Child
Health
Wednesday 3rd February 2016

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• 9:30 Arrival and Refreshments
• 10:00 Welcome & Introductions – Tracey Grainger (SRO)
• 10:10 The Strategic Context – Alison Golightly
• 10:45 Questions and Discussions
• 11:15 Refreshments
• 11:30 Discussion
• 13:00 Lunch (provided)
• 13:50 Conclusion
• 14:00 Close
Agenda for 3rd February

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The
Strategic
Context

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Why a
digital
strategy
now?

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The existing model of CHIS will not scale
to meet current and future challenges

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• The way we collect and share information about children has not
changed significantly in over 20 years.
 Child Health Record Departments (CHRDs)
 Child Health Information Systems (CHIS)
 Personal Child Health Records (PCHR or ‘red book’)
• This model appropriate between 1993- 2013 when the NHS was
organised into Primary Care Trusts, before electronic system use
became widespread and before information systems became capable of
exchanging information.
• This model not appropriate now and cannot serve the paperless, patient
access and digital citizen agendas
• This model has broken down and we are seeing many operational
issues at provider-level
Current landscape

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• Is fragmented – partial records in several different systems – Maternity,
GP, Child Health Information Systems, Acute
• No single picture of a child’s health interventions
• Children unregistered to CHIS systems (National Incident Team Report)
• Is complex - disparate systems with very little interoperability
• Very limited access to information for our partners outside the NHS, for
example, Social Services or Education
• Some providers of public health services for children have no access
• Information still largely recorded on paper and sent from care-setting to
care-setting
• Information re-keyed from systems to system creating large
administrative burden
• Possible for children’s information to be mislaid/delayed when they
move to a new area
• Impossible to easily view a child’s history and determine how healthy
they are
Current challenges to information services

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Consumer market leads digital expectations, ‘If I can do this with
Amazon, Easyjet, Facebook, etc. . . why can’t I do this in health?’
Significant change is needed:
• We need to change our perceptions of organisational boundaries and
technical constraints
• We need to enable our health and care professionals with technology,
not hinder them
• We need to put parents, families and children and young people front
and centre stage with regard to information, not as an after thought
• Online access for children, parents and families to their own health
records is important, but is not the whole story
• More information sharing across care settings within Health
• Much more information sharing with partners outside of the NHS
• The potential to integrate apps and equipment
Digital health not yet a reality in our
health and care services

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• The technologies and business models we need to deliver digital health
have been slow to emerge/be proven, however they are now mature
• We haven’t yet tackled the challenges in a comprehensive way, instead
we have tried to apply ‘sticking plasters’ to a model of providing health
information that is past its sell by date
• The complexity of services provided to parents, families and children
and young people can look daunting to bring together in one overall
operating model, as can the number of providers of health and care
services.
Why is digital health not a reality yet?

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Complexity/variety of services
Modified after RMP 2009

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Map of Child Health Info

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• The new strategy must address the disparity and complexity of the
systems being used and suggest ways in which child health information
can be unified and its exchange and its presentation simplified.
• It must substantially reduce the duplication of data and the effort tied up
in duplication (re-keying) of data
• It must provide a means of enfranchising parents and young people as
active participants in their own care/care of their children
• It must propose a digital model which works at both:
• the population level – all children and young people who receive
public health services
• the individual level – those with complex health and care needs
• And which provides new capabilities and solutions to all three audiences
for health information:
• Personal Health – Professional Health - Public Health
What the digital strategy must cover

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Challenge: Simplify & Standardise

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Shared Core Clinical Record Overview

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• Lack of effective population management – how can we know with
certainty where a child is? We need to improve how we track children
and ensure that all are offered the preventative interventions they are
entitled to.
• Lack of up to date, accurate and consolidated records – how can we
know how healthy a child is?
• Improved electronic exchange of information (interoperability) – ensuring
data can flow between systems and to parents and young people in a timely,
automated way.
• Consolidating information into a core overview dataset - improving the
comprehensives of children’s records
• Lack of access to information – how can we ensure appropriate access
to information for all involved in the care of a child? We need to address
consent and information sharing
• Lack of guidance, collaboration and standards. We need to provide a
digital roadmap for how to develop child health information services and
collaborate with colleagues to achieve the change needed.
Key operational issues must be addressed

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The challenge in standardising and simplifying health care
information so it can be presented in one core overview to the
owners/subjects of that data - parents, families, children, young
people. . .
. . . yet be consumed/used/drilled down into/added to in many
different formats in many different places by many different people
so the overview is always up to date and relevant
• Modern digital problems: content management and ‘user’ experience
• Underpinned by a fundamental and chronic lack of interoperability
• Complex contractual landscape for systems (systems and services not
necessarily in the same organisation
• Resulting in. . . limited access to relevant information or digital tools for
everyone.
[See handouts for all the problems surfaced in the previous workshop]
The real technology/business problem is. . .
.

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Strategic
Vision
(or what are we
going to do
about this?)

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• We are masking some of the complexity in our discussions with
stakeholders to make the problem seem manageable (simplifying)
• We have asked/are continuing to ask stakeholders what they want,
through:
 Survey
 Online communities
 1-1 Interviews
 Workshops, meetings, presentations
• We have proposed a vision/future state of child health information
which (potentially) solves the problems we’ve identified which we are
currently testing and validating with stakeholders in a series of
consultations (of which this event is one)
• Right now, we are in the ‘WHAT’ phase– WHAT we should
change/build/enable, rather than HOW we will do it.
• We need to get to HOW very quickly indeed
So what are we going to do about this?

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Personal v Professional v Public Health

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Growing a digital tree for children

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Where we are now

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The Trunk: a place for collaborative care

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Business Model: Digital Child Health Hub
My Health
Notes
(Personal
Narrative)
My
Preferences
My Local
Services
My Health
Events
My Healthy
Child
Programme
My Health
Facts
Information to HUB from Care
Professionals & Services
Information to HUB from Parents, Children and
Young People
Data
ProfessionalHealth
PersonalHealth
PublicHealth
SummaryView
&
HealthPromotion
CommunicationPreferences
InfoSharingPreferences
(Consent)
TellUsOnce
CollaborativeHealth
MaternityDatasetCYPsDataset
CAMHsDatasetGeneralPracticeExtractionService

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Digital Child Health Hub: Example content

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The Big Picture

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How?

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What we need is time, effort, energy, enthusiasm
and dogged determinism.
We have the technology, we have the
capability. . .
SPRINT MARATHON HURDLES
  

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Incremental, iterative building

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A building block approach

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Precedents
Outcomes Work done on previous programmes = viable building
blocks so we’re re-using, not re-inventing the wheel
Core Clinical record
dataset
PCHR, Summary Care Record
Track and transfer
populations
PDS, UK NSC Screening Systems
Failsafe Mechanisms UK NSC Screening Systems, CP-IS
Interoperability Now happening more regularly. A lot of experience in the HSCIC
Interoperability Team and NHS England
National Data
Standards for Interop
SCCI Process
Dataset Items Maternity, CAMHS CYP Datasets, CHIS OBS
Personal Health
Records/ Way
Finding/ Apps
PHR Team in NHS England, eRedbook pilots, Information Service for
Parents, Patient Knows Best, various baby care apps, e.g. Baby Buddy,
Access for non
health professionals
Registration authorities, Role-based access for LSP systems, smart card
access to SCR, sealed envelope mechanisms, cross-govt programmes

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Options:
An
opportunity
to shape
the future

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Technical Options Summary
Option
1. Do nothing (min)
2. Full national solution for new child information service (max)
3. Make the Primary Care (GP) record the default child health record/core clinical record dataset
4. Make current CHIS systems the default child health record/ core clinical record dataset
5. Full national reporting solution, (no operational functionality other than overview/ consolidation
of information)
6. National core clinical record dataset with limited modular operational functionality
7. Multi-organisational publication of/subscription to child health events
8. Hybrid: National core clinical record dataset with limited modular operational functionality
+ Multi-organisational publication of/subscription to child health events
+ Enhanced primary care record

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Our Desired Outcomes
ID The required state change for child health information services
1 Core clinical record dataset for a child/ young person 0-25 exists by 2020 and this information service can be re-
commissioned by Local Authorities if required. Is an NHS owned repository and is agnostic as to systems
supplying the data, as these will meet national standards for interoperability.
2 The information service tracks and transfers responsibility for providing health services to children electronically
on a whole (England) population basis. Population cohorts easily configured/re-aligned. Enables change in
population footprints and management of populations.
3 The information service has an inbuilt failsafe mechanism to flag/alert that a child is outside of the care of the
usual responsible agencies.
4 Interoperability is well advanced allowing exchange of key data items electronically, substantially reducing the
burden of manual data entry, enabling productivity savings to be made.
5 National standards for interoperability are agreed and mandated by ISN. Timelines for compliance are enforced.
6 Essential data items/datasets for a core clinical record for health and social care professionals are defined and
in use, supporting point of care decisions and secondary use
7 Digital platform for a personal child health record is in place by 2018. Parents, children, young people and carers
have electronic access and a record of the care they are entitled to. They have a digital means of contacting
health professionals and wayfinding within the NHS. The platform/ information architecture can be ‘hooked’ into
apps
8 Access for non-health professionals has been standardized according to protocols and interlinks with consent
models and role-based access, identification and authentication mechanisms.
9 Roadmap/ information architecture for how child health information is gathered/consolidated/accessed is
available and can support local authorities in commissioning

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Your Desired Outcomes?
ID ????????????????????????????????????????
1 To have a clear steer about national standards and requirements for interoperability
2 To have earlier oversight of proposed changes to datasets, including immunisation
changes
3 To have earlier oversight of proposed changes to reporting requirements
4 For accreditation for interoperability to be straightforward
5 To understand the strategic direction for the development of child health information
6 For accreditation for framework agreements to be straightforward
7 For a supplier consultation/update forum to be convened
8 To have simpler, shorter, less costly procurement routes

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Timeline &
Roadmap
(or How and
When?)

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0-6 months
• Mid February 2016
 – 2nd draft of strategy
 - discussion of options for implementing the vision
 - start of business cases for early implementation work
• End March 2016
 – 3rd draft of strategy
• April - July 2016
 – approvals for publication of strategy
 - completion of business cases for early implementation work
 - start of business cases for significant build and development work
Immediate Timeline

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Possible Future Timeline

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Questions,
Discussion