Developments on Information Sharing
and the Pioneers
Mark Golledge
Programme Lead – Health and Care Informatics
Local Government Association
25th 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 crosscutting 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
Southend Pioneer:
Cornwall
Information Sharing for
Pioneer:
South Tyneside Risk Stratification & Year
Information
Pioneer:
of Care (and application
Sharing with
Information
to CAG following deep
voluntary sector
Sharing for direct
dive);
(Age UK)
care (& deep dive)
Risk Strat. for
Case Finding
Kent Pioneer: Whole
Place Analytics and
Year of Care activity;
Risk Strat. for
Commissioning
Sharing for
Direct Care
Sharing for
Commissioning
& Research
Leeds Pioneer:
Information Sharing
for work on
Integrated Digital
Care Records &
Person Driven
Services (e.g. health
apps)
WELC Pioneer:
Tower Hamlets
information sharing
for Risk
Stratification
purposes;
WELC Pioneer:
Tower Hamlets
information sharing
for work with
Monitor on
Capitated Budgets;
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 longterm 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?