Developments on Information Sharing and the Pioneers Mark Golledge Programme Lead – Health and Care Informatics Local Government Association 25 th November 2014

Outline Background to Pioneer Programme; Information Sharing – the National Context; Information Sharing – the Integrated Pioneer Context; Information Sharing – the Southend Context; 5 Challenges & 5 Lessons; Key questions & thoughts for discussion / future research;

Background to Pioneer Programme 14 Integrated Pioneer Sites announced in November 2013 to lead the way in delivering joined up health and care; Local initiatives underway to improve the way care is delivered but alongside four cross- cutting areas: Leadership and Workforce; Provider Development; Pricing and Contracting (Monitor & Capitated Budgets); Informatics – 8 identified streams of work - one of which around information sharing;

Information Sharing – The National Context Caldicott Report in April 2013 – and Government response in September 2013; Establishment of Accredited Safe Havens (stage 1) and Data Services for Commissioners Regional Offices (DSCROs); care.data & CCG Pathfinder Sites announced in October; Consultation Summer 2014 on Regulations – Accredited Safe Havens & Case Management – being reviewed; Personalised Health and Care 2020 published November 2014 (chapter 8); Dame Fiona Caldicott – National Data Guardian for Health and Care announced Nov;

Information Sharing – The Pioneer Context Sharing for Direct Care Sharing for Commissioning & Research Cornwall Pioneer: Information Sharing with voluntary sector (Age UK) Leeds Pioneer: Information Sharing for work on Integrated Digital Care Records & Person Driven Services (e.g. health apps) Southend Pioneer: Information Sharing for Risk Stratification & Year of Care (and application to CAG following deep dive); Kent Pioneer: Whole Place Analytics and Year of Care activity; WELC Pioneer: Tower Hamlets information sharing for Risk Stratification purposes; WELC Pioneer: Tower Hamlets information sharing for work with Monitor on Capitated Budgets; Risk Strat. for Case Finding Risk Strat. for Commissioning South Tyneside Pioneer: Information Sharing for direct care (& deep dive)

Information Sharing – The Southend Context Collaboration between Southend CCG, Southend Council and South Essex Partnership Trust (Community Provider) with PI Benchmark as supplier; Year of Care, Better Care Fund, JSNA activity as well as joint MDTs for direct care - includes Risk Stratification for Commissioning & Case Finding; 4,000 social care clients – 185,000 population size; 3 types of requirements – anonymised, aggregated data; personally identifiable for direct care & pseudonymised data for analysis; Application to CAG for S251 approval & longer-term arrangements;

Pioneer Lessons, Challenges and Opportunities Some practical challenges: 1.Case matching & identifying whether people are known to health / care; 2.Access to NHS number for social care & how far this is progressed (supporting commissioning); 3.Logistics of Data Sharing Contracts and Data Sharing Agreements; 4.Operationalising fair processing & opt in / out arrangements; 5.Data flows, models and data quality: consent / pseudo at source / pseudo on landing / S251 as temporary measure;

Pioneer Lessons, Challenges and Opportunities Some practical lessons: 1.Being clear on the detail of what you are trying to achieve and why it’s needed – don’t share just because it sounds good! 2.Don’t try to boil the ocean – start small and build up – but have agreement on the long- term vision; 3.Work with those people seeking to find solutions – ask “what do I need to do?” 4.Seek advice from others but apply locally – there are many different objectives / models implemented; 5.Focus on enabling conversations at all levels rather than just implementing the technology;

Key Questions / Thoughts for Future Discussion & Research Broad but critical questions: 1.How can we best engage with the public / practitioners in relation to information sharing, how do we avoid confusion whilst building public trust (sharing vs protection)? 2.What does a whole system, consent based approach to sharing look like and is it realistic to achieve this nationally? 3.How do we develop people driven services – enable people to share their own information about themselves (e.g. health apps) and is there any evidence to say this is effective anyway? 4.What is the right balance: national prescription vs local design and how do we avoid disrupting local innovation by developing national solutions?