NWC England Ecosystem event

Patient Centred Data Exchange

Welcome

Councillor Alistair Bradley

NWC England Ecosystem

Presented by:

Dr Liz Mear

Chief Executive

House keeping

• In case of emergency

• Mobile phones

• Twitter #NWCEcosystem

• Wifi: Wifi Name: THEvent

Wifi Passcode: 0125751515

Today’s programme

• Working in partnership across the region

• Working with all stakeholders

• Overcoming barriers to integrated care

• Examples of digital products

Aims and objectives of AHSNs Innovation, Health and Wealth • To spread innovation at pace and scale across

regions

• To integrate the strengths of higher education, the NHS, industry, third sector, local authorities

• To improve health of individuals and communities • To focus on the needs of local populations • To speed up adoption of innovation into health

and social care • To build a culture of partnership and collaboration • To create wealth

NWC AHSN Digital Innovation work stream

• Spreading digital innovations at pace and scale across NHS

• Integrating the strengths of higher education, the NHS, industry, third sector

• Empowering health and social care to better track, manage, and improve residents health.

• Reducing inefficiencies in healthcare delivery,

• Making medicine more personalised and precise • Speeding up adoption of innovation into

healthcare • Creating wealth

AHSNs, AHSCs and the research and innovation landscape

INVENTION EVALUATION ADOPTION DIFFUSION

Research Councils – set the agenda

CLAHRCs

AHSCs AHSNs

NHS Patient Care

NHS Patient Care

CLRNs

Funding bodies and research centres

Connected Health Ecosystems ECHAlliance Connected Health Permanent Ecosystem

Patients must be at the centre of the Ecosystem as the users of connected health

services. Patients will help to drive the design and innovation in connected health services and in so doing take more control over their conditions for better health and quality of life.

Since our last event…

• Engaging with key networks - Europe-wide • Raising awareness and developing new

partnerships • Established connected health working party • Readiness tool for tele-health • Working with national leads to share leads

to share learning and best practice. • Events on specific areas of work: healthy

apps

Digital Technology innovation Healthy App work

Engagement events with key stakeholders to

– review needs, wants and expectations

– support new partnerships and working arrangements across health and industry

– showcase best in class examples

– discuss barriers and solutions to achieve improved care.

VIDEO LINK…….

https://www.youtube.com/watch?v=r2c9-DMMtxY

Interoperability: The opportunity

Bleddyn Rees

Partner and Head of Healthcare here at Wragge Lawrence Graham & Co and is a Non-Executive Director at the European Connected Health Alliance (ECHA).

North West Coast Academic Health Science Network

NWC England Ecosystem Meeting Wednesday, 8th October 2014

Interoperability: the Opportunity?

Bleddyn Rees NED ECHAlliance

European Connected Health Alliance Bringing Together the future of Health, social care & Wellness

@bleddyn_rees

Overview

1. Refresh about the European Connected Health Alliance.

2. A vision for digital health and social services for me, you and everyone.

3. What is interoperability?

4. The use & challenge of standards

5. Interoperability Projects in the EU

6. Update of ECHAlliance Events & News

16

About us…

Community Interest Company

Not for profit, Connected Health Alliance CIC (registered in Northern Ireland)

Our Mission

“Bringing Together the future of Health, social care & Wellness”

Our Mantra

“Health & Social care is an investment for people wellbeing and for growth & jobs creation”

Membership Organisation

220+ members in over 20 countries

Connected Health Ecosystems

International network of Ecosystems

Promote Connected Health and our members

Connect & support the innovators

Implement & scale-up solutions

through Ecosystems

Business models &

Entrepreneurship

Act on Public policies

(Health/social and Economy)

Educate, Communicate &

Disseminate

Primary functions

Montpelier

France

Scotland (UK)

Manchester (UK)

Athens (Greece)

New York (USA)

NWC England (UK)

Oulu

(Finland)

Barcelona

(Spain)

Northern

Ireland (UK)

Yorkshire

& Humber UK

Wales

UK Latvia

International network of Permanent Connected Health Ecosystems

Skane

Sweden

Nice

France

Toulouse France

Estonia Galicia Spain

Limousin

France Netherlands

Republic of Ireland

Turku

Finland

Basque

Spain

Italy

Canada

2. A vision for digital health and social services for me, you and everyone.

(1) Online access/Patient Portal where I can

• Book GP, Optician (?) and Dentist (?) appointments

• Book Hospital appointments

• See my test results from my GP or Hospital

• See my Medical Records

• Store my wellness data?

• See my Optician’s Results/Prescription?

• See my Dental Records?

• All ePublic Services (e.g. the XRoad Estonia)?

2. A vision for digital health and social services for me, you and everyone.

(2) System Integration

• GP & Hospital access “my” record in real time

• Health & Social Care records can be accessed

• In EU & US my summary care record can be accessed if I am unwell

2.3 The NHS & ICT

• “Our vision is of an information revolution which people have the information they need to stay healthy, to take decisions about and exercise more control of their care, and to make the right choices for themselves and their families. This includes an accurate record of their care, available to them electronically *

• “Health and adult social care information will be liberated from a closed, bureaucratic system in order to serve patients and the public, and to help drive better care, improve outcomes, innovation and the better use of resources” *

Liberating the NHS July 2010

• “I believe that the NHS must develop a more open, innovative and integrated culture – one that improves the health of the public and the quality of care by putting patient voices and patients needs at the heart of a new clinically-led system”

• “The world is shrinking: in an age of connectivity where people access information at the click of a button, the NHS cannot remain in the information dark ages”

Professor Steve Field, NHS Future Forum, 10 January 2012

2.4 A vision for digital health and social services for me, you and everyone.

Source: Dr Oliver Harrison,

Healthways

2.5 A vision for digital health and social services for me, you and everyone.

Source: Dr Oliver Harrison,

Healthways

2.6 A vision for digital health and social services for me, you and everyone.

Source: Dr Oliver Harrison,

Healthways

2.7 Which countries are leading the way?

Source: Dr Oliver Harrison,

Healthways

3.1 What is interoperability in a healthcare context?

• Technical ICT equipment/systems are compatible & able to work

together

• Semantic Information is compatible/the same

• Allowing different IT systems and software to:

o Communicate

o Exchange data

o Use the information that has been exchanged.

3.2 Why is it important?

• an interoperable environment improves healthcare delivery and ultimately healthcare outcomes by making the right data available at the right time to the right people

• Enables the development of a Global healthcare industry & sustainable health systems

Implementing the HHS-EC MoU on Cooperation Surrounding

Health IT

Transatlantic Cooperation Assembly

October 23, 2013

Doug Fridsma, MD, PhD, FACP, FACMI

Chief Science Officer & Director, Office of Science & Technology

ONC

US Department of Health & Human Services

Introduction

• December 17, 2010: Secretary Kathleen Sebelius signed non-binding MoU with European Commission – Facilitate availability and routine use of

international standards

– Strengthen relationships and cooperation on mutual health ICT goals

• MoU outlines approach to foster mutual understanding of challenges faced by both sides in advancing the use of health IT

Issues of Immediate Focus

• Development of internationally recognized standards & specifications for interoperability

• Strategies to promote and develop a highly skilled health IT technical/support workforce

International Interoperability Standards

• Achieving interoperability across international borders is a key goal of immediate importance and immense potential.

• 3 distinct work streams: – Standardized terminology (clinical, laboratory, RX

& administrative data)

– Standard message structure

– Standardized patient-controlled electronic exchange

4.1 The use and challenge of Standards ONC’s Standards “Stack”

How should well-defined values be coded so that they are universally understood? How should the message be formatted so that it is computable? How does the message move from A to B? How do we ensure that messages are secure and private? How do health information exchange participants find each other?

ONC: Office of the National Co-Ordinator for Health IT www.healthit.gov.uk Source: ONC

Vocabulary & Code Sets

Content Structure

Transport

Security

Services

4.2 Resources need for rich semantic interoperability

Rec

ord

str

uct

ure

an

d c

on

text

privacy workflow

Clin

cail

term

ino

logy

Consistent representation,

access and interpretation

reference models data types archetypes Templates Near-patient device interoperability

guidelines care pathways decision support algorithims

architecture identifiers for people policy models structural roles functional roles purposes of use care settings pseudonymisation

clinical terminology systems classification systems terminology sub-sets value sets and micro-vocabularies post-co-ordination multi-lingual mappings semantic context model categorial structures

Source: EuroRec

5.1 Examples from across the ECHAlliance International Network

• There are local, national, European and international examples of interoperability initiatives

– Locally – Manchester AHSN Datawell project, focus of June Ecosystem meeting in Manchester

– Nationally – Northern Ireland’s Electronic Care Record –integrated health and social care record rolled out in 2013/14

5.2 Examples from across the ECHAlliance International Network

• Europe – epSOS project

– 6 year EC funded pilot project completed in June 2014;

– Aim to design, build and evaluate a service infrastructure that demonstrates cross-border interoperability between electronic health record systems in Europe

– 25 different European countries

– www.epsos.eu

• Trillium Bridge Project

– Feasibility study on Bridging Patient Summaries across the Atlantic

• How:

– MU2 and epSOS patient health summaries

• When:

– From: July 2013 to February 2015

• Who:

– Consortium comprising EU member state ministries, provider networks, industry, SDOs

5.3 Examples from across the ECHAlliance International Network

5.4 Objectives of Trillium Bridge

• Building the Transatlantic bridge for patient summaries – Use cases gap analysis identify barriers and easy wins – Interoperability assets Implementations Validation – Policy alignment, future standardization, and sustainability – Feasibility study to guide future developments

• Why? – Reduce barriers for transatlantic coordination, health care, and

trade – Decrease standards development and implementation costs – Accelerate convergence towards global standards – Support rights of citizens to their health information

• Realize the vision of EU-US eHealth cooperation • http://www.trilliumbridge.eu/

5.5 Samsung’s vision

Combine diverse technologies and disciplines to enable preventive health

Algorithms

Preventive Health

Semiconductor and Hardware

Cloud & Big Data

Mobile

Behavioural Science

Healthcare

Conclusion: US “Meaningful Use” & 5 overarching goals for Health IT

1. Improve quality, safety and efficiency

2. Engage patients and their families

3. Improve care co-ordination

4. Improve population and public health and reduce disparities in care

5. Ensure privacy and security protections

eHealth week

ECHAlliance was the strategic partner of the

Greek Presidency of EU for the eHealth Forum

2014, in Athens. It was a huge success for

ECHAlliance and all of our members and

partners. We really succeeded in driving forward

the conversation about eHealth at an international

level.

The busy forum included:

• 4th EU-US eHealth Marketplace & Cooperation Assembly - organised by ECHAlliance in partnership with US Trade &

Commerce, Office of National Coordinator, Washington USA & the European Commission. It addressed the commercial

opportunities for companies on both sides of the Atlantic and provided an update on progress on interoperability and

workforce skills.

• B2B Matchmaking session - with hundreds of pre-arranged or informal networking.

• Speakers’ Corner - 3 days, 35 speakers, 14 countries, countless new connections.

• European Innovation Partnership (EIP) meets Connected Health Ecosystems - ECHAlliance was delighted to partner with

the EIP programme session at the eHealth Forum.

• Boosting SME growth & competitiveness –'GET Funded & International' @ eHealth Forum provided a unique opportunity

for SMEs to present their investment and internationalisation plans to an international panel of investors, purchasers and

industry leaders.

Listen to Brian’s interview with TechTalks @ eHealth Forum:

‘Can connected health reform healthcare?’ here

ECHAlliance collaborates with the European

Commission for the eHealth Week 2015, in Riga

(Latvia), 11-13 May 2015. Especially on B2B

matchmaking sessions, EIP AHA reference

sites/Ecosystems cooperation, Speakers’ Corner, EU-US

marketplace… See next news on www.echalliance.com or write us on

info@echalliance.com

EU Marketplace for eHealth and the EIP on AHA, Brussels 2014

ECHAlliance has organised the “EU Market place for eHealth and EIP on AHA”, in cooperation

with the European Commission, GET Project, AAL Programme and AGE Platform Europe.

The EU Marketplace event was focused on bringing together large industry, SMEs, policy makers, researchers, care

professionals, service providers, buyers and consumers through formal and informal meetings.

The objective was to provide a platform for all stakeholders in connected health and AHA actors’ to meet, share best

practices and develop effective collaborations leading to new projects and business opportunities. The event also provided

a platform for the exchange of information between procurers and potential suppliers.

Key figures

180+ attendees registered

40% of companies, 17% of Governments and private insurances Supporting Partners

200+ B2B matchmaking

16 topics through the “Meet & Debate” tables

20 short presentations through the Speakers’ Corner

European Commission offices

All Action Groups and several Reference sites of EIP on AHA represented

EU-US Marketplace & Conference, Boston 2014

ECHAlliance organises the 5th EU-US eHealth Business Marketplace & Conference “Transforming Care

& Accelerating Economies”, 21-22 October in Boston, as part of the Massachusetts Connected Health week 2014.

Join global connected health innovators, public officials, patient groups, academics and entrepreneurs this fall at the 5th

EU-US eHealth Marketplace and Conference. The action packed EU-US eHealth Marketplace will take place in the

prestigious surroundings of the Massachusetts State House in Boston.

ECHAlliance is actively engaging with NIMAC, colleagues in Massachusetts, the US Department of Health and Human

Services (DHHS), the European Commission DG Connect (EC) and the wide network of ECHAlliance members across the

USA and Europe to organise this exciting event.

All information and registration on: https://www.b2match.eu/eu-us-ehealth-marketplace-2014

The programme includes:

• EU/US workshops to foster continued work on the Memorandum of Understanding between the federal Department of

Health and Human Services and the European Commission on work force development and interoperability.

• B2B Matchmaking opportunities for businesses to find other industry partners.

• Informative sessions featuring prominent speakers on Big Data Analytics, Patient Engagement and Global

Partnerships.

• Two networking receptions including: Opening reception at the Massachusetts State House Library and closing

reception at the Partners Connected Health Symposium.

• Shark Tank: SMEs and start-ups will have the opportunity to present their business to experts and investors.

SAVE THE DATE 2nd Health & Wellness @ Mobile World Congress 2015 Barcelona | 3 – 4 March 2015 The European Connected Health Alliance (ECHAlliance) is delighted to announce the 2nd Health & Wellness vertical programme of the Mobile World Congress 2015, Barcelona 3 - 4 March 2015.

After the success of the Health & Wellness @ Mobile World Congress 2014 we know 2015 is going to be even bigger and better. The agenda so far:

Tuesday 3 March supported by Mobile World Capital Barcelona will be dedicated to interactive sessions and workshops. It will be held in the Mobile World Centre, at the centre of Barcelona. Wednesday 4 March will include a high level programme including international leaders in the health and wellness sector. It will be held in the heart of the Mobile World Congress at Fira Gran Via, Hall 8.0 Theatre District.

Register your interest in learning more and keeping up to date as planning develops – email info@echalliance.com

Website: www.echalliance.com

Email: info@echalliance.com

European Connected Health Alliance Bringing Together the future of Health, social care & Wellness

Thank you & Questions

The Challenge

47

What has been happening across the International

Network

Brian O’Connor, Chair

European Connected Health Alliance

brian@echalliance.com www.echcalliance.com

48

www.echalliance.com

@ECHAlliance

-

ECHAlliance

Liz Page ‘Joining the dots for patients and Families’

Liz Page Patient Voice

Joining the dots for patients and families

“Interoperability means the ability of health information systems

to work together within and across organizational boundaries in

order to advance the effective delivery of healthcare for

individuals and communities.”

Wikipedia

Interoperability 101…

What patients and families have to navigate…

Patient Pathway

YP

Endocrinology

Paediatric Neuropsycholog

y

Genetics

Paediatric Neurology

Adult specialist Neurology

Centre - London

Haematology

Children’s Dental Hospital

GP

Pharmacy

Community Physio

School

Youth Service

Children’s Services

Young carers

Local Authority

3rd

sector

Adult

endocrine

Adult

Haematology

College

Health &

Social Care

plan

Adult

Psychology

Adult

Dental

Hospital

Who is talking to whom? P

aed

ia

tric

En

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olo

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Pa

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ia

tric

Ne

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gy

Pa

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Ne

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lo

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Ad

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Ne

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Ce

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Pa

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Ha

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ato

lo

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De

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pita

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GP

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un

ity

Ph

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Sc

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cal A

uth

ority

Ch

ild

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's

Se

rv

ice

s

Yo

uth

S

erv

ice

3rd

S

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Yo

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are

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Pa

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nt

Neuropsych Neuropsych Neuropsych Neuropsych Neuropsych Neuropsych Neuropsych Neuropsych Endocrine

Neurology Endocrine Endocrine Endocrine Endocrine Endocrine Endocrine Endocrine Endocrine Endocrine Endocrine Neuropsych

Specialist

neuro

Specialist

Neurology Neurology Neurology Neurology Neurology Neurology Neurology Neurology Neurology Neurology Neurology

Haematology Haematology

Specialist

Neurology

Specialist

Neurology

Specialist

Neurology

Specialist

Neurology

Specialist

Neurology

Specialist

Neurology

Specialist

Neurology

Specialist

Neurology

Dental Dental Haematology Haematology Haematology Haematology Haematology Haematology Haematology Haematology Haematology Haematology

GP GP GP Dental Dental Dental Dental Dental

Community

Physio

Community

Physio

Community

Physio

Community

Physio

Community

Physio

Community

Physio

Community

Physio

Community

Physio

School School School GP GP GP GP GP GP GP GP

Local

Authority

Local

Authority Local Authority School School School School School School School School School School School

Children's

Services

Children's

Services

Children's

Services

Children's

Services

Children's

Services

Children's

Services

Children's

Services

Parent Parent Parent

Local

Authority Local Authority

Local

Authority

Local

Authority

Local

Authority

Local

Authority

Local

Authority Local Authority Local Authority Local Authority

3rd Sector Youth Service Parent Parent Parent Parent Parent Parent Parent Parent Parent Parent Parent Youth Service

Youth Service Youth Service Young Carers Youth Service Youth Service Young Carers

3rd Sector 3rd Sector 3rd Sector 3rd Sector 3rd SectorYoung Carers Young Carers

Pathway of a single letter

• PATIENT • dictated • prioritised • typed • sent • prioritised by receiving secretary • placed for attention to recipient • read • response • dictated • prioritised • typed • sent

• received back by originating secretary • read • prioritised • placed before consultant. • read • decision • outcome given at next appointment. • PATIENT

So why is data share needed ?

“Shifting work to other departments is a phony efficiency…”

Fred Lee – (If Disney ran your hospital, p39)

Could data share have prevented this?

I go to Hospital X.

“We can’t deal with your case, we are sending you to Hospital Y.”

I go to Hospital Y, which is in another region: sadly, after a few

months, and a couple of visits, the consultant dies.

Hospital Y no longer has a specialist and tell me:

“We are sending you back to referring Hospital X.”

I hear nothing for a YEAR, so contact original referring Hospital X.

“Oh, we thought you were being treated by Hospital Y.”

Continued……. “Well they thought that I was still being seen by you.” “But we have discharged you because we sent you to Hospital Y.” “Well they have discharged me back to you because they think I am still under

you. And they have no consultant now.” “Well you’ll have to be re-referred to us, as too much time has passed. And

you’ll have to wait to be seen as a new referral.” It transpires letters crossed but were ignored as both places deemed I wasn’t

their patient any more. The fact that the person they suggested refer me had died was not their

problem. It was mine. As was the delay in treatment. I had to go to Hospital Z.

Timely care…?

• Endocrine and Haematology Departments in same space

• A letter from one to the other takes 8 weeks

• Treatment withheld in this time

• Inpatient procedures needed, and done by non specialist staff

• No understanding of the tests or necessity for strict timing

• Would not call consultant to verify parent’s information as it was late at night

Saving time or lives? Let’s do both!

• Notes in two folders both over a foot thick

• Letters from different places filed in there since last visit

• Consultant does not/will not attempt to find them

• Patient carries hand held copies of all letters received to show in order for treatment to be informed.

Person centred care? You decide…

• Visits to London Hospital

• 3 family members seen

• Different appointments through year for clinic

• Repeated story telling

• Travel and cost to escort family members

• Forgetting one of the reasons we need them is difficulties with mobility!

• Tooth extraction required

• Need information from different departments/hospitals

• Many visits – nothing ready

• Finally after 2 YEARS all information available.

• Tooth took 5 minutes to extract!

Checks and Balances…??

• Unplanned admission to hospital for unrelated cause

• Specialist knowledge required before standard drug regime to be followed

• No-one willing to make the call – patient had to refuse treatment due to risk

• Patient called specialist nurse on mobile from bed whilst doctor looked on, and handed phone to them.

• “Well you learn something new every day..!”

Original source : Year of Care led by Sue Roberts

Life with a long term condition: the person’s perspective

Interactions with the service: planned or unplanned

Data Share Devices

www.theidbandco.com

Thank you!

Colin Brown Consultant Physician and Gastroenterologist, University Hospitals of Morecambe Bay.

Connecting Patient Records and

Patient Care in the 21st Century Dr Colin Brown Chief Clinical Information Officer Chorley Town Hall – October 2014

What do we need for healthcare ?

Town County Population

Lancaster Lancashire 134,000

Barrow-in-Furness Cumbria 59,256

Kendal Cumbria 28,300

Morecambe Lancashire 45,000

Ulverston Cumbria 11,210

Grange-Over-Sands Cumbria 4,000

Bowness on Windermere Cumbria 8,400

Connecting Patient Records and Patient Care in the 21st Century

• Ageing Population

• Increasing Fragility

• Dementia

• Cancer Survivorship

• Chronic Disease

• Complex MDT clinical care and pathways of care

• Poverty / access to Healthcare / Digital awareness

Healthcare Challenges in the 21st Century

Connecting Patient Care in the 21st Century

1ST Floor Library (3 floors in total)

Patient Records in the 21st Century

0

500

1000

1500

2000

2500

3000

3500

4000

Immediate Discharge Summaries Created in Lorenzo Jan 2011 - Sept 2012

Immediate Discharge Summary Letters

Cumbria - Whole system approach

• Connectivity COIN-Fibre to all, NHS wireless for all

• Hardware- Full virtualisation inc BYOD/any device

• Software – Interoperable ePR

– Electronic postal service (views and documents) • STATIC

– Air Traffic Control for patients/clients • DYNAMIC

GP Summary Care Record

Palliative Care - Epaccs

Better information…….

Better decisions…….

Better outcomes

Patient Records in the 21st Century

Don’t be scared of disrupting the Status Quo

Questions to the Panel

Break out sessions Room Session Facilitator- scribe

and timekeeper

Main room Examples from the NWC Lancashire Liverpool CCG

Liz Ashall-Paye

Break out 1 Cerner Justin Waitling

Break out 2 Caradigm Lisa Butland

Break out 3 EPPaCs Stephen Burrow

Refreshment Break

Healthier Lancashire Digital Health Work Stream

Declan Hadley

Digital Health Lead

NHS England (Lancashire) Local Area Team

Lunch Break (1 hour)

Break out sessions Room Session

Main room Information Governance Janet King NHS England

Break out 1 AIMES Dennis Kehoe

Break out 2 E-Redbook

Break out 3 Structured Networking Belddyn Rees

Group discussions Reflections

1. where are we now? 2. where do we want to be?

3. How can you help us to get there?

Lorraine Acheson Liz Ashall-Payne

Philip Dylak Lorna Green Lisa Butland

Liz Mear

Facilitators

Next Steps

Dr Liz Mear

Chief Executive

North West Coast Academic Health Science Network