www.england.nhs.uk

Making a Real Difference to Child HealthWednesday 3rd February 2016

www.england.nhs.uk

• 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

www.england.nhs.uk

The Strategic Context

www.england.nhs.uk

Why a digital strategy now?

www.england.nhs.uk

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

www.england.nhs.uk

• 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

www.england.nhs.uk

• 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

www.england.nhs.uk

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

www.england.nhs.uk

• 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?

www.england.nhs.uk

Complexity/variety of services

Modified after RMP 2009

www.england.nhs.uk

Map of Child Health Info

www.england.nhs.uk

• 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

www.england.nhs.uk

Challenge: Simplify & Standardise

www.england.nhs.uk

Shared Core Clinical Record Overview

www.england.nhs.uk

• 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

www.england.nhs.uk

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. . . .

www.england.nhs.uk

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

www.england.nhs.uk

• 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?

www.england.nhs.uk

Personal v Professional v Public Health

www.england.nhs.uk

Growing a digital tree for children

www.england.nhs.uk

Where we are now

www.england.nhs.uk

The Trunk: a place for collaborative care

www.england.nhs.uk

Business Model: Digital Child Health Hub

Contact List

s

Appt. Bookin

g

Messaging

My Health Notes

(Personal Narrative)

My Preferenc

es

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 PeopleData

Pro

fess

iona

l Hea

lth

Personal H

ealthP

ublic

Hea

lth

Allergies

Medicatio

ns

Conditions

Sum

mar

y V

iew

& H

ealth

Pro

mot

ion

Care Setting

Attendances

Comments for

professionals to see

Com

munication P

referencesInfo S

haring Preferences

(Consent)

Tell Us O

nce

Col

labo

rativ

e H

ealth

GP

AcuteMH

Mat

erni

ty D

atas

etC

YP

s D

atas

et

CA

MH

s D

atas

etG

ener

al P

ract

ice

Ext

ract

ion

Ser

vice

www.england.nhs.uk

Digital Child Health Hub: Example content

www.england.nhs.uk

The Big Picture

www.england.nhs.uk

How?

www.england.nhs.uk

What we need is time, effort, energy, enthusiasm and dogged determinism.

We have the technology, we have the capability. . .

SPRINT MARATHON HURDLES

www.england.nhs.uk

Incremental, iterative building

www.england.nhs.uk

A building block approach

www.england.nhs.uk

PrecedentsOutcomes Work done on previous programmes = viable building

blocks so we’re re-using, not re-inventing the wheelCore 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

www.england.nhs.uk

Options:An opportunity to shape the future

www.england.nhs.uk

Technical Options SummaryOption1. 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

www.england.nhs.uk

Our Desired OutcomesID The required state change for child health information services1 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

www.england.nhs.uk

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

www.england.nhs.uk

Timeline & Roadmap(or How and When?)

www.england.nhs.uk

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

www.england.nhs.uk Possible Future Timeline

www.england.nhs.uk

Questions, Discussion