Manchester Connected Health Ecosystem Healthcare Data & Digital Innovation Thursday 20 th April 2017 0900 - 1300 MSP Citylabs, Oxford Road, Manchester Wifi Username: FREE_MSP_WIFI @Man_Inf @GM_AHSN @ECHAlliance #McrEcosystem
European Connected Health Alliance Bringing together the future of Health, Social Care & Wellness The Global Connector Driving new ways of working through Connected Health Ecosystems www.echalliance.com / info@echalliance.com
About ECHAlliance Registered as UK Community Interest Company (Not for Profit organisation) 550+ member organisations Companies, policy-makers, researchers, health & social care providers, patients, insurances, investors, etc. 16,000+ individuals as a community A reach into 39+ countries Europe, USA, Canada, China International Network of Ecosystems International Events Connector Digital Platform www.echalliance.com 3 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
International Network of Ecosystems 100+ quarterly gatherings per year Launching in 2017 Existing Ecosystems Austria Czech Republic Republic of Ireland England - Manchester Belgium Scotland England - North West Coast Canada Slovenia England - London Croatia Spain – Valencia England - Yorkshire & Humber Denmark Spain - Galicia Estonia Finland Spain – Catalonia Finland - Oulu France USA - New York France – Nice PACA Germany Canada - Ontario Greece Netherlands Northern Ireland Spain Poland – Warsaw Wales
The Global Connector EUROPE NORTH AMERICA & CANADA CHINA
ECHAlliance Working Groups 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. 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 Groups are open to all ECHAlliance members – contact info@echalliance.com for details.
ECHAlliance CONNECTOR provides Visit www.echalliance.com Marketplace & Showroom (solutions/projects presentations, tenders, calls of projects, Professional business opportunities) Social Network & Intelligence tool Community (market data & analysis, case studies, assessment results, educational/training Database content, publications) (profiles, connect) Communication Events, workshops, tools webinars manager Collaborative working tools (shared docs, chat/email tool…)
ECHAlliance is appointed Strategic Partner to the Estonian eHealth Presidency 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
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 Contact Brian O’Connor, Chair, brian@echalliance.com Damian O’Connor, COO, damian@echalliance.com Mikaela Nordenfelt, Ecosystem Network Coordinator, mikaela@echalliance.com www.echalliance.com / info@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’ on 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.
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