the digital child health strategy
TRANSCRIPT
www.england.nhs.uk
Children’s
Health
Digital
Strategy
Update
Alison Golightly
May 2016
www.england.nhs.uk
‘Knowing where every child is and how healthy they are’
‘Appropriate access to information for all involved in the care of
children’
What is it?
A document which sets out the case for transforming the way information is handled in children’s
health services. It suggests that making health information interoperable – translating it into
messages which can be exchanged – is the only way of achieving our key objectives:
www.england.nhs.uk
Fragmentation
• Partial records in several different systems – Maternity, GP, Child Health Information
Systems, Acute
• No single picture of a child’s health interventions
No Failsafe for population management
• Children unregistered to CHIS systems (National Incident Team Report)
• Possible for children’s information to be mislaid/delayed when they move to a new area
Limited Access
• 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 to IT systems
Paper Heavy/Manually Intensive
• 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
Current Challenges in CHIS
www.england.nhs.uk
Strategy aims at risk reductionCurrent live issues Solution
Lack of effective population
management – how can we know
with certainty where a child is?
Improve how we track children by
• Location
• Responsible professionals and agencies
• Population Screening (Healthy Child Programme 0-19)
ensuring 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.
Presenting information in a core overview dataset reflecting the
current Personal Child Health Record requirements
Lack of access to information –
how can we ensure appropriate
access to information for all
involved in the care of a child?
Addressing authentication, consent and information sharing in a
framework for parents, families, carers, children and young people.
Being transparent about what is currently shared and why.
Lack of guidance, collaboration
and standards.
Providing a digital roadmap for how to develop child health
information services and collaborate with colleagues to achieve the
change needed
www.england.nhs.uk
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8 H
PV
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0d 5d 8d 11d 7w 9w 12m 13m 24m 40m 4y 5y
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
Services
Voluntary
Services
Mental Health
Services
Emergency &
Acute Services
Justice
ServicesSocial Services
Community
Services
Neonatal
Services
Maternity
Information
Systems
Screening
Information
Systems
Primary Care
Systems
GPESCYP DatasetCAMHs
Dataset
PCHR
146
CHRDs
Map of Child
Health Info
Research &
Policy
Maternity
Dataset
SCR
National Audit
www.england.nhs.uk
5y
5y
Complexity/variety of services
All
Most /
Many
Some
Few
Imms &
VacsScreening
Healthy
Child
Programme
GP Routine
Check
All of the
above +GP Illness
Visit
Local
Hospital
Health
Visiting
School
Nursing
All of the
above +
Chronic or
Acute
Illness
(2-5%)
LT Disability
(3%)
Mental
Health
(2-10%)
Requires
multi-
agency care
All of the
above +
Safe
Guarding
(0.6%)
Complex
Care
Packages
(0.5-1%)
Looked
After
Children
(0.3%)
Adoption
(0.02%)
Popu
lation C
overa
ge
Complexity of Care
Modified after RMP 2009
www.england.nhs.uk
A Whole Population Approach: Patient Segments in Child
Health
• Advice & prevention eg: Breast feeding / Immunisation / Mental well-being / Healthy eating / Exercise / Dental health
Healthy Child
• eg: Safeguarding issues / Self-harm / Substance misuse / Complex family & schooling issues / Looked after children
Vulnerable child with social needs
• eg: Depression / Constipation / Type 2 diabetes/ Coeliac Disease / Asthma / Eczema / Nephrotic syndrome
Child with single long-term condition
• eg: Severe neurodisability / Down’s syndrome / Multiple food allergies / Child on long-term ventilation/ Type 1 diabetes
Child with complex health needs
• eg: Croup / Otitis media / Tonsillitis / Uncomplicated pneumonia / Prolonged neonatal jaundice
Acutely mild-to-moderately unwell child
• eg: Trauma / Head injury / Surgical emergency / Meningitis / Sepsis / Drug overdose / Extreme preterm birth
Acutely severely unwell child
Dr Bob Klaber & Dr Mando Watson Imperial College Healthcare NHS Trust
www.england.nhs.uk
Personal Health
Info for use by: Parents, Children, Young People,
Carers
Info sharing controlled by: Parents, Children, Young
People, Carers
Info type: per child records with personal identifiers and personal
data. Recorded by parents and young people and professionals
Info grouped by: families, extended family, social groupings
Info Systems in use: PCHR, Health Passports, eRedbook, Baby Buddy,
Patient Knows Best and many others
Professional Health
Info for use by: professionals in Health, Social Care and
Education caring for parents, children and young people
Info sharing controlled by: the organisation in which the care takes place, e.g. GP practice, hospital, children’s centre, etc
Info type: groups of individual, identifiable health records e.g.
caseloads, medical notes. Recorded by professionals
Info grouped by: organisation providing the care
Info Systems in use: CHIS, PAS, Maternity, MH Systems, GP Systems,
SCR, CP-IS, A&E, Screening Systems and many others
Public Health
Info for use by public health professionals and
commissioners providing care services to populations
Info sharing controlled by: national and local agreements
Info type: anonymized data, does not identify individual children. Often
aggregated or statistical. Analysed rather than recorded.
Info grouped by: national, regional, or local populations. Sometimes by
disease or condition
Info Systems in use: Maternity and Children and Young People’s Datasets, Immunisation Cover
reports, Screening Key Performance Indicators and others
Contributes to Is source for
www.england.nhs.uk
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 PeopleData
Pro
fessio
nal H
ealth P
ers
onal H
ealth
Public
Health
Su
mm
ary
Vie
w
&
He
alth
Pro
mo
tio
n
Co
mm
un
ica
tion P
refe
rences
Info
Sh
arin
g P
refe
ren
ces
(Co
nse
nt)
Te
ll Us O
nce
Co
llab
ora
tive
Healt
h
Ma
tern
ity D
ata
se
tC
YP
s D
ata
se
t
CA
MH
s D
ata
se
tG
enera
l P
ractice E
xtr
action S
erv
ice
www.england.nhs.uk
What if all this information is ‘events’?
{
“birthWeight”: 6500,
“gestationLengthBirth”:
35,
“deliveryMethodBaby”:
“ventouse”
}
{
“birthWeight”: 6500,
“gestationLengthBirth”:
35,
“deliveryMethodBaby”:
“ventouse”
}
{
“birthWeight”: 6500,
“gestationLengthBirth”:
35,
“deliveryMethodBaby”:
“ventouse”
}
{
“birthWeight”: 6500,
“gestationLengthBirth”:
35,
“deliveryMethodBaby”:
“ventouse”
}
{
“birthWeight”: 6500,
“gestationLengthBirth”:
35,
“deliveryMethodBaby”:
“ventouse”
}
{
“birthWeight”: 6500,
“gestationLengthBirth”:
35,
“deliveryMethodBaby”:
“ventouse”
}
{
“birthWeight”: 6500,
“gestationLengthBirth”:
35,
“deliveryMethodBaby”:
“ventouse”
}
{
“birthWeight”: 6500,
“gestationLengthBirth”:
35,
“deliveryMethodBaby”:
“ventouse”
}
{
“birthWeight”: 6500,
“gestationLengthBirth”:
35,
“deliveryMethodBaby”:
“ventouse”
}
{
“birthWeight”: 6500,
“gestationLengthBirth”:
35,
“deliveryMethodBaby”:
“ventouse”
}
{
“birthWeight”: 6500,
“gestationLengthBirth”:
35,
“deliveryMethodBaby”:
“ventouse”
}
{
“birthWeight”: 6500,
“gestationLengthBirth”:
35,
“deliveryMethodBaby”:
“ventouse”
}
{
“birthWeight”: 6500,
“gestationLengthBirth”:
35,
“deliveryMethodBaby”:
“ventouse”
}
{
“birthWeight”: 6500,
“gestationLengthBirth”:
35,
“deliveryMethodBaby”:
“ventouse”
}
{
“birthWeight”: 6500,
“gestationLengthBirth”:
35,
“deliveryMethodBaby”:
“ventouse”
}
My Health Notes
(Personal Narrative)
My Preferences
My Local Services
My Health Events
My Healthy Child
Programme
My Health Facts
www.england.nhs.uk
A small packet of health/care/education/ personal information in a lightweight message format.
An example - ‘Birth Details’ from both the PCHR and the Maternity Dataset
Many core child health events are already described at both PCHR and MCDS levels – these can be put into message format straight away.
A message might look like this :
{
“birthWeight”: 6500,
“gestationLengthBirth”: 35,
“deliveryMethodBaby”: “ventouse”
}
There will be message publishers – originators of events. And message subscribers –consumers of events
What is an event?
Gestation at DATE TIME OF BIRTH (BABY)
in days
GestationLengthBirth
Weight of baby in grams at birth
17206120
The method for delivering babyDeliveryMethodBabyDELIVERY METHOD
(CURRENT BABY)
17206160
17206080 BirthWeightBIRTH WEIGHT
GESTATION LENGTH (AT
BIRTH)
www.england.nhs.uk
Events Hub
Su
mm
ary
Vie
w
&
He
alth
Pro
mo
tio
n
Ma
tern
ity D
ata
se
t
CA
MH
s D
ata
se
tG
enera
l P
ractice E
xtr
action S
erv
ice
www.england.nhs.uk
Child Health Event Information = multiple event types: transactional events, clinical
events, non-events, consent events
Publication/Subscription Hub / Archive = the engine that facilitates the exchange of
messages between publishers of event information and subscribers to that information
and the archive that stores all that information for security and audit purposes.
Events Catalogue = the list of all health event messages for children and young
people which are published and can be subscribed to. This is, in effect, a core child
record dataset broken down into bite-sized, exchangeable chunks of information.
Failsafe management of the child population = event information and rules which
tells us location, which professionals/agencies a child is under the care of and whether
they’ve had the standard programme of care. Needed to prevent children missing care.
Personal Health Records = The anticipated National PHR (nPHR) and a digital
Personal Child Health Record (ePCHR) prototype to inform nPHR
design and message specs/APIs
Terminology
www.england.nhs.uk
Voluntary
OrganisationsEducational
Systems
Personal
Health
Records
Local Authority
SystemsNon
-NH
S
Syste
ms
National
Screening
Systems
Publication & Subscription Engine and Archive (Hub)
Child
Protection
Information
Sharing
Maternity
Systems
Primary
Care
Systems
CHIS
Acute &
Emergency
Systems
Mental
Health
Systems
Dataset and API Definitions (Events Catalogue for PCHR)
Datasets
Dataset
Submission
Analysis Failsafe Management
Access Management Service ( Interfaces, Consent and Role Based Access)
CYP,
Parents,
Carers
NHS
ProfessionalsNon-NHS
Professionals
Public
Health
PDS
Telemetry and
Digital Tools
Regional
IDCRSpecialty
HubLocal IDCR Local IDCR
Specialty
Hub
Na
tio
na
l D
igita
l
Assets
SCR
National Personal Health Record (nPHR)
ePCHR Prototype
Interop Prototype
Future Public Health Repositories
www.england.nhs.uk
Managem
ent
Super-Managed
Co-ordination of access and
outcomes difficult. Need for
a shared core record
Managed
Children and Young
People registered with a
GP Practice
Access and information
needs can be met by
practice and SCR
Unmanaged
Potentially vulnerable
population without access to
services and information
Population
TypeStatus
Children and Young
People NOT registered
with a GP Practice
Children and Young
People with multi-agency
care
Service Provision
10/
20
80/
90
Up to
20
Appx
%
Managing care for whole populations
CHRDS report 20-30% churn in population for 0-5 year olds
www.england.nhs.uk
National Stakeholder events
• 3 National stakeholder engagement events, discussion with and contribution from133 stakeholders representing all sectors
• 2 National supplier engagement events, discussion with 137 supplier representatives
Engagement meetings with key stakeholders and experts
• 40 Individual interviews
• 26 Group consultations/interviews
Online Forum
• 131 members, Q&A stream, 115 strategy document downloads
• 3 month contribution survey, 31 survey responses
Social Media
• 7,059 CHDS slide share downloads
• Tracey Grainger blogs 1,590 views
• NHSE Child Health webpage hits 179
Direct consultation with parents and children
• Run for us by the Association for Young People’s Health and RCPCH
Where are we up to? Engagement
www.england.nhs.uk
Strategy Document
• 4th draft of strategy due for internal review this week
• If fine, sent for organisational comment/ loaded to forums
• 1-2 month approvals/endorsement process anticipated for organisations
• Publication expected July 2016
Implementation
• 5 year delivery plan currently being created
• Discovery work (thinking about how we do it and costing it) has begun
• Implementation likely to begin Sep 2016
Funding
• Proposed to be funded from the £4.2 billion additional IT funding announced in
February 2016
• Business cases pending
Where are we up to? Next steps
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3 years to fully complete platform and messages (PCHR scope)
Minor transformation of services before that (increasing efficiency
due to interoperability), significant change possible after
When?
www.england.nhs.uk
Subscribing to events
• What information do I want to receive?
• Do my services need identifiable clinical info for direct care?
• Do my services require anonymized data for public health monitoring?
• Are the information governance protocols in place to receive this?
Publishing events
• What events do I want to create and publish?
• Do my services need to pass child-related events to health or education colleagues for direct care? (EHCs, Child Protection Plans, SEN assessments, 2/2.5 Integrated Review)
• Are the information governance protocols in place to do this?
Personal Health
• Parents and children can have personal health information available digitally for the first time
• It becomes possible to relay personalized health promotion material to Personal Health Records
• Will this change the way you deliver services?
Performance Monitoring/Public Health Statistics
• By year 5, real-time data should be available for child health
• Will this change the way you monitor services
What does this mean for me?
www.england.nhs.uk
Pragmatic Information Governance
www.england.nhs.uk
Problem: No ‘owners’ of data
• In the Data Protection Act there are no ‘owners’ of data
• You are either a “data subject” – the data is about you
• Or you are a “data controller or processor” – you hold data about subjects
• If there are no owners, who is to say whether data should move and who to?
Solution: Recognise the different domains/audiences for health information
• a personal domain, where the patient is, in effect, the “owner” of any data about them in a record
• a statutory or institutional (professional) domain, where a trust/organization might hold data about a patient as a data subject but has a responsibility to ensure appropriate use and allow the patient to access the data electronically.
• a public health domain where anonymized data is analysed for a variety of ‘greater good’ purposes
Consent:
• Make it the default assumption that the patient is the owner or controller of all data relating to them. They can then share this data with whichever parts of the health and care and public health services they wish.
Pragmatic Information Governance
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An online forum to contribute to the debate/get involved: email [email protected] to receive your invite.
Further information