Healthcare Data & Digital Innovation Thursday 20 th April 2017 - - PowerPoint PPT Presentation

Manchester Connected Health Ecosystem

Healthcare Data & Digital Innovation

Thursday 20th April 2017 0900 - 1300 MSP Citylabs, Oxford Road, Manchester Wifi Username: FREE_MSP_WIFI @Man_Inf @GM_AHSN @ECHAlliance #McrEcosystem

The Global Connector

www.echalliance.com / info@echalliance.com

European Connected Health Alliance

Bringing together the future of Health, Social Care & Wellness

Driving new ways of working through Connected Health

Ecosystems

About ECHAlliance

Registered as UK Community Interest Company

(Not for Profit organisation)

3

550+ member organisations

Companies, policy-makers, researchers, health & social care providers, patients, insurances, investors, etc.

16,000+ individuals as a community International Network of Ecosystems A reach into 39+ countries

Europe, USA, Canada, China

International Events Connector Digital Platform www.echalliance.com Innovative Projects with MAP expert services

ECHAlliance Ecosystems: basic principles

• Geographic zone
• Multi-stakeholders – open to all
• Permanent with regular meetings
• Shared strategy & action plan
• Light Governance
• Member of an International network
• Patients / Citizens at the centre

Existing Ecosystems

Czech Republic England - Manchester England - North West Coast England - London England - Yorkshire & Humber Estonia Finland - Oulu France – Nice PACA Greece Northern Ireland Poland – Warsaw

International Network of Ecosystems

100+ quarterly gatherings per year Republic of Ireland Scotland

Slovenia Spain – Valencia Spain - Galicia Spain – Catalonia USA - New York Canada - Ontario

Launching in 2017

Austria Belgium Canada Croatia Denmark Finland France Germany Netherlands Spain Wales

The Global Connector

NORTH AMERICA & CANADA CHINA EUROPE

To provide a platform for stakeholders, responsible for a given topic area, to meet, promote and advance their work across the ecosystem network, therefore maximising knowledge sharing and best practice.

ECHAlliance Working Groups

Groups are open to all ECHAlliance members – contact info@echalliance.com for details.

Medicines Optimisation Group

Chair: Mike Scott, Head of Pharmacy & Medicines Management, Northern Health & Social Care Trust, Northern Ireland

eHealth Strategy Group

Chair: Ain Aaviksoo, Deputy Secretary General E Services & Innovation, Estonian Ministry of Social Affairs

Mental Health & Wellbeing Group

Chair: Matthew Hotopf, Director South London & Maudsley NHS Foundation Trust & Professor of General Hospital Psychiatry, Kings College London

Events, workshops, webinars manager Professional Social Network & Community Database

(profiles, connect)

Marketplace & Showroom

(solutions/projects presentations, tenders, calls of projects, business opportunities)

Communication tools Collaborative working tools

(shared docs, chat/email tool…)

Intelligence tool

(market data & analysis, case studies, assessment results, educational/training content, publications)

ECHAlliance CONNECTOR provides

Visit www.echalliance.com

The Estonian Ministry of Social Affairs has appointed the European Connected Health Alliance to assist them in preparations for the e-health conference "Health in the Digital Society. Digital Society for Health“ (www.ehealthtallinn2017.ee) taking place during the Estonian Presidency of the Council of the European Union. The conference will show already existing digital health solutions, use-cases and technologies to demonstrate that value-adding citizen-centric health services and systems are the reality and the future has already arrived to be made available to all Europeans. Learn more here

ECHAlliance is appointed Strategic Partner to the Estonian eHealth Presidency

Consultation on investment in innovative digital solutions for Active & Healthy Ageing – have your say!

The European Innovation Partnership on Active and Healthy Ageing, supported by ECHAlliance, has just launched a short online consultation with any organisations that are actively deploying and implementing large-scale, sustainable, digitally-enabled innovative solutions for Active and Healthy Ageing. The consultation was launched to identify plans for investment (both committed and potential) in the implementation of innovative solutions for Active and Healthy Ageing 2017 – 2020. The consultation will inform the creation of an Investment Map illustrating the EU investment potential in this area, contributing to the EIP on AHA Policy Dashboard . Submission of responses is via Online Consultation

https://echalliance.com/page/EuConsultation

European Connected Health Alliance

Bringing Together the future of Health, Social Care & Wellness

www.echalliance.com / info@echalliance.com

Contact

Brian O’Connor, Chair, brian@echalliance.com Damian O’Connor, COO, damian@echalliance.com Mikaela Nordenfelt, Ecosystem Network Coordinator, mikaela@echalliance.com

Developing a trusted research environment – CHC & Citizens Juries

Dr Mary Tully Director of Public Engagement, CHC

Public Engagement for Data Use

• Purpose of public engagement for data use:
• To raise awareness of what the data science initiative is

doing and hence to create public trust

• to reflect public values, interests or concerns & ensure

public trust through making the data science initiative trustworthy

Three aims of CHC

• 1. To continually improve and optimise the health and social care system

to deliver better care, more efficiently, by providing actionable information to inform decision making at all levels.

• 2. To establish a social contract with the population that gives license to

use healthcare data for the public good.

• 3. To accelerate business growth in the digital health sector for the

benefit of the North of England.

Methods of Engagement

• Informing
• E.g. Presentations, podcasts, blogs
• Consulting
• E.g. Panels & user groups, surveys & interviews
• Collaborating
• E.g. Citizen Science, public as employed researchers, ‘expert patient’
• n research team, citizens’ juries

What is a citizens’ jury?

• “deliberative democracy”
• “based on the premise that, given enough time, opportunity, support

and resources, members of the public are quite capable of arriving at decisions about complex matters”

• Citizens chosen, given information and questions to answer over 2+

days

• Jefferson Center method

Taoiseach addressing Citizens’ Assembly

Who were the citizens?

• 18 per jury, 9 from across each CHC region
• Broadly representative mix (2011 census for England):
• Age
• Gender
• Ethnicity
• Educational attainment
• Geographical spread
• Also sampled on prior health record sharing / privacy view (2015

Wellcome IPSOS MORI survey-1524 adults)

• Recruited through various sources including recruitment website

Indeed

• Paid £100 per day + expenses

What did the juries do?

• Over 4 days:
• 7 expert witnesses
• Group exercises and deliberations
• Voted on jury questions
• Joint conclusions
• Polling
• Developed a jury report in situ with facilitator
• Same process, facilitators, experts for both Manchester

and York – different jurors

Video of citizens juries

• https://www.connectedhealthcities.org/get-involved/citizens-juries/

Planned uses

• a. NHS staff get data from ambulances and hospitals, to do research to

help paramedics get better at spotting signs of a stroke.

• b. University researchers get data from hospitals, GPs and social care

about frail elderly patients, to help GPs identify patients needing extra care and follow up.

• c. University researchers get data from hospitals and GPs, to provide

information about how to give more appropriate care to people suffering from alcohol-related problems.

• d. University researchers get data from hospital, GP and local authority

records, to plan future demand for A&E services and meet the needs of special groups.

Potential uses

• a. A pharmaceutical company requests general practice data to

understand better what prescribing patterns get the best results for patients with diabetes.

• b. A large computer software company seeks data about patients from

hospital and general practices to enable its intelligent software to “learn” and so be used to aid future diagnosis of sepsis.

• c. A developer of an app, designed for a wearable device like a fitbit

seeks hospital data to design the app to suggest safe fitness regimes tailored to each individual’s capability and characteristics.

• d. A health club chain seeks aggregated data about people who have or

have not had a heart attack to understand and identify the type of members who are most at risk of a heart attack and monitor them.

Key findings

• Many jurors changed their view to become more supportive

in general of sharing information for public benefit, even though they may have become less supportive of specific planned and potential uses considered.

Key findings

• A majority of people supported all 4 planned CHC uses.
• A sizeable minority of jurors did not support the planned

uses about frailty and A&E.

• A majority of jurors supported the potential uses for

pharmaceutical company and artificial intelligence, with support clearly increasing through the course of the jury.

• Only a small minority of jurors were supportive of potential

uses for fitness tracker app and fitness club chain, with support clearly decreasing through the course of the jury.

• Jurors who voted against planned and potential uses often

did so because they doubted that public benefit would result from the use.

Examples for “yes” and “no” to planned uses

• Yes:
• May lead to improved treatments, services, and care

delivery and eventually to better health outcomes and more lives saved

• No:
• May generate findings or research conclusions that are

not supported with funding commitments so they may not lead to implementation

Examples for “yes” and “no” to potential uses

• Yes:
• Could lead to the development of efficient and cost-

effective drugs, treatments and diagnosis programmes that might lower costs for NHS and patients

• No:
• Tend to be driven primarily by the need to increase or

generate profit without ensuring a clear public benefit from the use of people’s personal health data

CHC response

• CHC will commit to continue and improve in two broad

areas of engagement:

• Putting systems in place to ensure that any data use

initiatives will be for public benefit above all other considerations

• Refining the content of its communication about what it

is doing or planning to do (both in terms of why data will be used and how data will be protected)

Thank you

Digital Excellence

Rachel Dunscombe Director of Digital Salford Royal Group @ukpenguin

Our Dynamic Environment

• Hospital Group Vanguard
• Integration - Salford and Pennine organisations into Group
• Integrated Care Vanguard – Adult Social Care
• Centre of Global Digital Excellence (2 years)
• Devolution Manchester

Digital Excellence - Imperatives

• 1. Strategy – more “how” than “what”
• 2. Un-constraining pathway and care design
• 3. System Thinking – designing for the future

Strategy – Not “What” but “How”

Our Strategy is Navigation

What skills do we need ? How do we build the skills ? How do we partner ? What governance do we need ? What Frameworks should we use ? What is our culture ? Aligned to our outcomes roadmap

Owning and creating strategy

Un-Constraining Care

Un-Constraining Care

Digital Art of the Possible Digital Requirements

System Thinking – Conscious Design

New Disruptive systems

Data Standards key Interoperability standards key Plug and play of new solutions Algorithms / Machine Learning / AI / NLP

Questions

Manchester Connected Health Ecosystem

Information governance and sharing NHS patient data across organisational boundaries: a brief legal overview

Andrew Rankin and Chris Air – DAC Beachcroft

Information governance:

• Caldicott 2 defines it as the “requirements and

standards that the organisations and their suppliers need to achieve to fulfil the obligations that information is handled legally, securely, efficiently, effectively and in a manner which maintains public trust.”

What are the rules relating to sharing patient data?

• Data Protection Act 1998
• Caldicott 1, 2, 3
• GDPR
• ICO Guidance and Codes of Practice
• Common law of confidentiality – not codified by parliament
• NHS Code of Practice – confidentiality 2003
• HSCIC guidance in respect of confidentiality
• Human Rights Act 1998
• CQC Rules
• Other legislation: NHS Act 2006, Health and Social Care Act

2012, Health and Social Care (Safety and Quality) Act 2015

GDPR principles

• Fairly and

lawfully

• Purpose limitation
• Data

minimisation

• Accurate and

up to date

• Storage

limitation

• Integrity and

Confidentiality (Security)

Sharing patient data under the DPA 1998 / GDPR

• Medical records are categorised as sensitive personal

data / special categories of personal data

• Sharing of personal data must be fair and lawful
• Fairness is about telling patients what their personal

data will be used for and who it will be shared with.

• Lawfulness means that:
• sharing must comply with wider law including the law
• f confidentiality; and
• sharing must be justified by meeting certain

conditions under the DPA 1998 / GDPR…..

Processing Conditions

DPA 1998 1 x Schedule 2 condition

• Performance of a task carried
• ut in the public interest; or
• Legitimate interests (not

causing the patient undue prejudice) AND 1 x Schedule 3 condition

• Explicit consent;
• Vital interests; or
• Medical purposes

GDPR 1 x Article 6 condition

• Performance of a task carried
• ut in the public interest

AND 1 x Article 9 condition

• Explicit consent;
• Vital interests; or
• Medical purposes (now broader)

Medical Purposes under the DPA 1998

• (1) The processing is necessary for medical purposes

and is undertaken by

• (a) a health professional, or
• (b) a person who in the circumstances owes a duty
• f confidentiality which is equivalent to that which

would arise if that person were a health professional.

• (2) In this paragraph “medical purposes” includes the

purposes of preventative medicine, medical diagnosis, medical research, the provision of care and treatment and the management of healthcare services.

Medical purposes under the GDPR

• Article 9(2)(h) of the GDPR:

Necessary for the purposes of preventative or occupational medicine, for assessing the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment or management of health or social care systems and services on the basis of Union or Member State law or a contract with a health professional;

Consent under the DPA 1998 / GDPR

• For sensitive personal data, consent must be explicit, freely given,

informed and specific Under GDPR – it will be even harder to obtain valid consent:

• Must be able to “demonstrate” consent
• Requests for consent must be “clearly distinguishable from other

matters”, “clear & plain language”

• Right to withdraw consent at any time: must be “as easy to

withdraw as to give” consent

• Examination of whether consent is freely given or linked to

contractual relationship

• Therefore – cannot rely on implied consent (no pre-ticked boxes)

under DPA 1998 / GDPR……..

The Law of Confidentiality

• The real legal difficulty with data sharing is

the duty of confidentiality to patients. Beware of any analysis that only looks at the DPA/GDPR and not confidentiality.

• What is confidential is largely based on
• Guidance. There is a plethora of this from

DH, NHS England, HSCIC, GMC, Information Governance Alliance, Caldicott Review, ICO, new Information Guardian. This will need to be taken into account

Confidentiality and Consent

• Law of confidentiality – based on common law.
• Arises where information is given in circumstances where it is

expected that a duty of confidence applies

• In order to share confidential information, you need patient consent

– depending on the circumstances, this can be either:

• Implied consent; or
• Explicit consent
• Caldicott guidance:
• 1 - Six Principles
• 2 – 7th principle - duty to share information can be as important

as the duty to protect patient confidentiality.

• 3 – New consent / opt-out models for purposes beyond direct

care

• The position does not neatly align with the DPA 1998 and GDPR

Confidentiality and Consent

Implied consent or explicit consent? DIRECT CARE = OK to rely on implied

• sharing information to inform the care of

a particular patient

• internal audit by the care team

Statutory duty Health and Social Care (Safety and Quality) Act 2015 INDIRECT CARE = usually need explicit

• Making commissioning decisions
• External audit
• Risk stratification?

Eeek I’m stuck!

• Express consent from the patient
• Confidentiality suspended under section 251 of the NHS Act 2006

– an application to suspend will need to be made to the Confidentiality Advisory Group

• Use NHS Digital s254 to 256 of the Health and Social Care Act

2012

• R (WXYZ) v Secretary of State for Health
• Caldicott 3 and a technical solution?
• Health and Social Care (Safety and Quality) Act 2015

Want to share for indirect care? Options in

• rder to comply with the law of

confidentiality:

Non-medical purposes – what about compliance with the DPA 1998 / GDPR?

• When you cannot justify processing by relying on Schedule

3 (8) of the DPA 1998 or Article 9(2)(h) of the GDPR

• Look at an alternative:
• Review and consider other processing conditions under

Article e.g. explicit consent; or

• Fully anonymise the data.

Any Questions?

Contact Details

Andrew Rankin Legal Director  0161 934 3220  arankin@dacbeachcroft.com Chris Air Associate Solicitor  0161 934 3167  cair@dacbeachcroft.com

Group Discussion & Refreshments

Using data & information to deliver better healthcare – what can different sectors & organisations contribute?

• What data do you ‘own’ & how might you share it / gain consent?
• How might you / your organisation benefit from access to certain types of

data?

• What practical steps can be taken to deliver better data sharing?

@Man_Inf @GM_AHSN @ECHAlliance #McrEcosystem

Health Innovation Manchester An Introduction

Arjun Sikand – Commercial Director

VISION AND PURPOSE

Rising costs of health & social care and relatively slow introduction of innovations to address challenges are a major frustration to policy-makers and care providers

75

20% 30% £2b

Increase in over 65s population between 2011 and 2021 Increase in over 85s population between 2011 and 2021 Funding deficit to the economy by 2021 if no action is taken

Over the next five years, the Greater Manchester region faces significant public health challenges and is currently performing below national averages against a range of disease and mortality figures

The obstacles to more rapid implementation of innovations

• Fragmented and slow decision-making
• Structures which do not assist collaboration and co-
• rdination
• Lengthy and uncertain routes to adoption
• excellent initiatives in one locality are not shared across

the system

• Industry find multiplicity of orgs/initiatives confusing and

add to risk

The devolved NHS for GM has enabled the formation of an Academic Health Science System allowing for the acceleration of clinical research into clinical practice

76

HInM’s vision is to transform the health and wellbeing of the people of Greater Manchester by accelerating the introduction of innovation in our health and social care services.

The Unique offering of Greater Manchester

GMHSCP Delegated financial control Co-

• rdinated

Academic & Industry System Integrated Health Providers

(primary, secondary, mental & social care)

2.8

million citizens

Health Innovation Manchester brings together academic & clinical assets with industry innovators to create shorter & more certain pathways to adoption at scale

HInM, an Academic Health Science System (AHSS) is an integrated healthcare delivery system covering every stage of the translational pathway from discovery science through to health services commissioning & real world evaluation

The Translation Continuum via a GM Academic Health Science System

2.8

million citizens

Evaluation in Practice Commissioning & Adoption Discovery Science Proof of Concept Assessment & Validation

Health Innovation Manchester 77

As an AHSS, HInM is well placed to enhance GMs position and showcase our capabilities by aligning to local, regional and national initiatives and strategies

78

HInM’s strategic priorities align with and support not only the GM wide Digital Strategy but also feed into the national Accelerated Access Review and the Life Sciences Industrial Strategy highlighting GM’s as an exemplar site

• Streamlining mechanisms for identifying and prioritising innovations
• Working to accelerate approvals, adoption & evaluation of technologies
• Inward investment for clinical trials & regional data hubs
• Support for the practical and specialist skill shortages
• Integration of data records across GM for health and for social care
• Build GM-wide informatics capacity
• Provide a single voice for GM as we engage in national debate

PROGRESS TO DATE

Health Innovation Manchester’s development and progress has strengthened since summer 2016 and delivery of the Business Plan is now underway

September 2015 September 2016 February 2017 Business Plan completed Business Plan delivery commences HInM launched Review of HInM

Launched in late 2015 as a virtual organisation without dedicated resource HInM Business Plan signed off by Board with agreement that there was a clear delivery plan, and that this should begin immediately.

• Steering Group formalised as a Board and Executive Chair appointed
• Initiated discussions on merging AHSC and AHSN within a single HInM

brand and governance structure.

• Developing Business Plan with core HInM leads and relevant senior input

from across the H&SC system

• Delivery of key immediate tasks within the Business Plan begins
• Coalescing the AHSC and AHSN into one, combined team with a supporting

transition plan

• Developing KPIs for HInM; recruitment to urgent positions; and launching

the innovation pathway and calls for innovations.

‘One team’ under Health Innovation Manchester has been formed to tackle GM health challenges and support GM health and wellbeing priorities

8

Industry Academic Institutions Social services Health services Local Government Working in collaboration to support GM residents and improve outcomes

§ Engage all partners to define shared health improvement innovation goals § Coordinate and develop tools for evaluating innovation & measuring

• utcomes

§ Encourage shorter pathways from trial to approval & system-wide adoption § Seek

• ut

innovations which support GM’s priorities § Provide a single industry-facing brand for GM’s work

• n

health innovation

• Engage all partners to define shared

health improvement goals

• Coordinate and develop tools for

evaluating innovation & measuring

• utcomes
• Encourage shorter pathways from

trial to approval & system-wide adoption

• Seek out innovation which supports

GM’s priorities

• Provide a single industry-facing

brand for GM’s work on health innovation

Active, relevant and consistent engagement with all partners and stakeholders across the health and social care system will be vital to delivering innovation in support of the Health & Social Care Partnership’s shared goals

82

Health Innovation Manchester

SMEs: Local

small and medium enterprises

HEALTH & SOCIAL CARE SYSTEM ACADEMIC & RESEARCH PARTNERS INDUSTRY & BUSINESS PARTNERS

GPs and primary care Clinical Commissioning Groups x 12 Strategic Clinical Networks

Local Authorities x 10

Acute & community trusts

Health Innovation Manchester is focused on delivering three strategic priorities, quick wins and a digital health pipeline to build momentum

83 Strategic priorities

• 1. Informatics

Establishing a GM population-wide informatics capability as a vital tool to improve patient outcomes and access to innovations/trials. DataWell implementation is central to this.

• 2. Clinical Research Excellence

Extend our strong research and clinical trials expertise, and strengthen our infrastructure and processes to create a one-stop shop for industry wanting to access the GM H&SC system and our 2.8m population.

• 3. Precision Medicine

Leverage existing strengths in Precision Medicine, and building on data analytics capabilities, to redesign clinical pathways in the treatment of chronic diseases. Digital health pipeline Develop a specific GM digital and MedTech health brand to attract investment, drive business growth, and support innovation and clinical adoption. Quick wins Selecting and using a number of existing initiatives to establish and test the innovation pathway and its supporting processes.

The Innovation Pathway: providing structure, organisation and a systematic approach to translation and adoption through the H&SC system

84

Innovation Inflow & Screening Evaluation Lessons learned Implementation, Adoption and diffusion Qualification & Impact Assessment Proposed innovations through different channels Lessons learned and NHS specific needs feedback Innovation into local health economy

Adoption and diffusion will be supported by GM-level: commissioning governance, H&SC stakeholders engagement, project management, economics and evaluation support

Specific Digital & E- Health Calls Horizon Scanning General Industry Inquiries & Engagement Core Programmes*

Core Themes* - Informatics, Clinical Research Excellence, Precision Medicine

The Innovation Pathway: providing structure, organisation and a systematic approach to translation and adoption through the H&SC system

85

Core Themes* - Informatics, Clinical Research Excellence, Precision Medicine

Specific Digital & E- Health Calls Horizon Scanning General Industry Inquiries & Engagement

Stage 2: Qualification Stage 1: Screen Stage 3: initial impact assessment Evaluation framework

Pass Pass

Specific criteria is asked at each qualification stage with increasing degrees of detail to ascertain adherence to the strategic mission of HInM HInM Exec team sign

• ff on proposal

GM Partnership approval

Post pilot projects that have stalled

Detailed work up / Co-creation with industry to fulfil GM specific needs Project / Implementation initiated

Fail Fail Fail

Core Programmes*

Internally HInM Driven Externally Driven

Signposting to relevant

• rganizations to address gaps

Feedback + initial gap analysis & signposting to address gaps Evidence gap analysis – Next steps and signposting Infrastructure building projects from a GM perspective Datawell PSORT

86 Arjun Sikand Commercial Director Health Innovation Manchester arjun.sikand@healthinnovationmanchester.com

Manchester Connected Health Ecosystem

Future Events

The Nest focuses on the relationship between a father and daughter, Sean and Sara and is set in a world where Sean’s wifi-enabled smart home system takes care of all his needs, but also monitors his behaviour and health. The play follows Sean and Sara’s changing attitudes towards The Nest covering issues such as sharing information on social media, attitudes towards sharing health data for different purposes and targeted advertising. Search on Facebook for The Nest 2017 or on Twitter for @TheNest_2017@TheNest_2017 http://www.wegottickets.com/evenue/18138

https://www.eventbrite.co.uk/e/cisco-mi-idea-a-manchester-post-acccelerator- programme-for-tech-start-ups-tickets-32939023506 Register by Monday 24th April

https://www.eventbrite.co.uk/e/digital-technologies-the-new-era-of-healthcare-tickets- 33425036183?utm_term=eventurl_text

A two-day meeting to present recent developments in data science, with a focus on advanced analytics (machine learning, Bayesian statistics, scalable algorithms), privacy, visualisation, software and diverse applications. Speakers include leading data scientists from industry and academia Monday 15th & Tuesday 16th May http://www.ds-advances.org/

NHS Hack Day, the leading grass-roots community of digital health disruptors and innovators, will take place at Federation, the new Co-op Digital team’s HQ on Saturday 15th & Sunday 16th July https://www.digitalhealth.net/2017/04/nhs-hack-day-is-coming-to-the-ccio-and-cio- summer-schools/ http://nhshackday.com/ @NHSHackDay

http://openhealthcare.org.uk/open-data-in-the-health-sector/#executive-summary

Manchester Ecosystem Healthcare Data & Digital Innovation

Thursday 20th April 2017

@Man_Inf @GM_AHSN @ECHAlliance #McrEcosystem