Childrens Health Digital Strategy Update Alison Golightly May - - PowerPoint PPT Presentation

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Children’s Health Digital Strategy Update

Alison Golightly

May 2016

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‘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:

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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

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Strategy aims at risk reduction

Current 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

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NIPE Bloodspot Hearing New Baby Review 6-8 Week Exam 8/12/16 wk Imms 12 mth Review 12/13 mth Imms 2/2.5 yr Integ Review 3yr 4mth Imms 4-5yr eyesight check School Entry Chk Year 6 Check Year 8 HPV Booster Imms

0d 5d 8d 11d 7w 9w 12m 13m 24m 40m 4y 5y Public Health England

Personal Health Professional Health 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 / CHRD CHIS / CHRD

School Nursing Primary Care Health Visiting Midwifery Education Services Voluntary Services Mental Health Services Emergency & Acute Services Justice Services Social Services Community Services Neonatal Services

Maternity Information Systems Screening Information Systems Primary Care Systems GPES CYP Dataset CAMHs Dataset

PCHR 146 CHRDs

Map of Child Health Info

Research & Policy

Maternity Dataset SCR National Audit

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Complexity/variety of services

All Most / Many Some Few

Imms & Vacs Screening 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%)

Population Coverage Complexity of Care

Modified after RMP 2009

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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

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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

• rganisation 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

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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

Professional Health Personal Health Public Health

Summary View & Health Promotion Communication Preferences Info Sharing Preferences (Consent) Tell Us Once

Collaborative Health

Maternity Dataset CYPs Dataset CAMHs Dataset General Practice Extraction Service

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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

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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 baby DeliveryMethodBaby DELIVERY METHOD (CURRENT BABY) 17206160 17206080 BirthWeight BIRTH WEIGHT GESTATION LENGTH (AT BIRTH)

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Events Hub

Summary View & Health Promotion Maternity Dataset CAMHs Dataset General Practice Extraction Service

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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 Organisations Educational Systems Personal Health Records Local Authority Systems Non-NHS Systems 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 Professionals Non-NHS Professionals Public Health PDS

Telemetry and Digital Tools Regional IDCR Specialty Hub Local IDCR Local IDCR Specialty Hub

National Digital Assets SCR

National Personal Health Record (nPHR) ePCHR Prototype Interop Prototype Future Public Health Repositories

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Management

Super-Managed

Co-ordination of access and

• utcomes 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 Type Status

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

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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

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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?

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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?

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Pragmatic Information Governance

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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 england.digitalprimarycare@nhs.net to receive your invite.

Further information