One London conversation workshop 18 July slide deck

#OneLondon
OneLondonLHCRE–EngagementWorkshop18thJuly
One London Local Health and
Care Record Programme
Background: what are we
trying to do?

#OneLondon
• Test results
• Diagnoses
• Procedures
• Hospital attendances
• Hospital
appointments
• Long term conditions
• Previous conditions
• Ongoing
prescriptions
• Record of care plan
• Record of flu jab
• Social care
package
• Social
situation
(e.g. lives
alone)
• Nursing
care needs
• There is no single shared description about what is going on for a person, across the NHS
• NHS systems do not empower a person to see the whole picture of their care; and it relies on people themselves to
be the ‘glue’ that coordinates between silos in the system
• When a person gets care from one organisation it is very often the case that their care team cannot see all the
information they need to provide the safest and most coordinated care
• This situation perpetuates reactive and fragmented care
111
The way we work across the health and care system is fragmented

#OneLondon
111
• In each STP area, progress is being made on supporting care teams to see relevant (not all) information about a
person which is held in other parts of the system – the data is still held in silos
• Part of the One London proposal is to allow care teams to do that not just within the organisations of their STP area,
but right across London: so if someone from Clapham turned up at the A&E in Chelsea, care teams could see the
information they need – such as allergies, current medications, existing LTCs
• This is about creating a ubiquitous view of relevant information for direct care, at the point of care
• Frailty
flag
• CMC
Care Plan
One London Health and Care Information Exchange
We are each making some progress in addressing that
1

#OneLondon
111
• Frailty
flag
• CMC
Care Plan
• Many different types of services need to use (not just look at) integrated information to proactively identify people who could
benefit from additional support – e.g. identifying that someone is pregnant and has yet to have a flu jab; or noting that people
with atrial fibrillation need a different type of anticoagulant medication; or spotting that someone with multiple long term
conditions has been going to hospital much more frequently of late. This is hard if the data remains in separate silos.
• The One London proposal is to bring together personal data securely and in one place, so that there is a complete record
across the whole system, this will:
• help a range of different services to become more proactive at managing direct care across the population; and
• enable people to access and contribute to their record themselves.
One London Health and Care Information Exchange
One London Local Health and Care Record
A One London Local Health and Care Record could transform the level
of professional integration and service user empowerment
2
3

#OneLondon
• For the health and care system to keep improving it is important that professionals are able to look at what is actually
happening, and to explore the causes of particular trends, and the effects of new ways of working.
• This requires integrated information, but that does not need to contain data that identifies people specifically. The
One London proposal is to create a data service that can provide de-identified information to improve the health
and care system:
• for effective management of the system; quality improvement initiatives; or for medical research.
• e.g. in Israel doctors have used this type of data to create a tool to identify people who should be invited for bowel
cancer screening. The development of these tools can then be used in the real world to improve direct care for all.
One London Local Health and Care Record
One London De-identified Information
And using de-identified information intelligently could help improve
health and care services and outcomes for the whole population

#OneLondon
One London De-identified
Information
• Using de-identified data to
understand how services
are working, and to plan
safe and effective service
levels
• Using evidence of what has
happened to develop a
genuinely ‘learning health
system’
• Enabling new discoveries
that we can all benefit from
We want information, power and services focused on service users;
and we want to use information to create new healthcare knowledge
One London Local Health
and Care Record
111
• A genuine health record for
everyone
• People empowered to see,
and add to, their own record
• Professionals able to see all
relevant information to
provide safer and more
coordinated reactive care
• New abilities to use data to
support proactive care for
those who need additional
support, or who have
identifiable untreated risks

#OneLondon
We want information, power and services focused on service users;
and we want to use information to create new healthcare knowledge
UEC and 111
record visibility
Care Homes
connectivity
LTC ID: frailty
flag and AF
WSIC
development
CMC
IMPARTS and
PHR
One London
Demonstrator Projects
Intelligence:futureBI
One London
Enablers
(5i)
Involvementandengagement
Informationgovernanceframework
Informationarchitecture(DigitalArchitectureAuthority)
Infrastructureandconnectivity
Investment framework
Ubiquitous sharing at point of care
Normalised data layer for alerts and
proactive care
Patient access and control
LHCRE Goals (Initial stage)
2
3
1

Clare Curtis
18 July 2018
Public attitudes to
sharing patient data
@Patient_Data

understandingpatientdata.org.uk
@Patient_Data
Funding

1. Levels of public awareness: Key messages
• Awareness of how patient data is used beyond
individual care is low
• Understanding of commercial access to data is low
according to more studies than not
• ‘Spontaneous ideas’ as to how data might be used is
low 6
• A ‘gulf’ exists between how people think the NHS
was likely to use patient data and the reality 14

1. Levels of public awareness: the big picture
• 1/3 are not aware that health and care records are not
‘readily shared’ between health and care professionals13
• 25% of people are aware of the NHS Genomics programme
12,13
• In two surveys 80 and 82% of the general public polled had
not heard of the national cancer registry19
• There is little ‘spontaneous understanding’ of ‘how and why
healthcare data might be used’6

• There is support for access to patient data for
‘public benefit’. This is key to the acceptability of
using patient data beyond individual care.
• In deliberative work which discusses and
explores data uses, support and acceptance of
the principle of sharing data increases for some
participants, but this is not a simple picture
• Acceptability and support depends on the
specifics of data uses being explored.
2. Acceptability of using patient data: key messages

• ‘Public benefit’ is the key justification for people
accepting the sharing of patient data 20, 23, 5, 1
• Support is high for sharing data for direct patient care
(96%) (though less with social care and home care)13, and
for medical research (77%25 74%14 )
– These views vary and levels of support depend on the
nature of the research and levels of trust
• 80% would probably or definitely like their doctor to tell
them about research allowing researchers confidential
access to their medical records4
2. Acceptability of using patient data: the big picture

2. Acceptability of using patient data: how views may
change
• Many members of a citizens’ jury became more supportive of
information sharing for public benefit in general even if they
were less supportive about specific potential or planned uses
of data that had been open to consideration8
• During the course of focus groups, as participants became
more informed many found uses of data beyond individual
care more acceptable, including for commercial companies
using data23

6. Concerns in using patient data: key messages
• People are most concerned about certain types
of sensitive data
• Common concerns are around security, misuse
and causing harm
• There is some evidence that some groups of
people feel more powerless than others in the
face of concerns

Key messages
3. Be transparent
2. Be clear about the safeguards
1. Talk about the why

Thank you
hello@understandingpatientdata.org.uk
understandingpatientdata.org.uk
@Patient_Data
#datasaveslives

www.thersa.org
21ST CENTURY ENLIGHTENMENT
THE CASE FOR DELIBERATIVE DEMOCRACY
KAYSHANI GIBBON
18TH JULY 2018

www.thersa.org
Our mission is to create conditions
for enlightened thinking and the
collaborative action needed to
address today's most pressing social
challenges.
We act as a global hub, by enabling
millions of people to access the
most creative ideas, by nurturing
networks of innovators, and
through researching, testing and
sharing practical interventions.
The RSA

www.thersa.org
30,000 people around
the world support and
follow what we do.
We engage fellows in
our projects as much as
we can.
We host over 300 public
events each year.
We have over 100
million online viewers
and 500,000 YouTube
subscribers.
We combine practical
experimentation with
rigorous research to
create unique
programmes of work.

www.thersa.org
What is deliberation?
‘Delibarare’ – ‘to weigh or to consider well’.
• balance carefully, consider implications, including
the arguments for and against
• engage a group of individuals in discussions that are
informed
• promote the sharing of perspectives and values
that are diverse, and promote better understanding

www.thersa.org
Deliberative innovations: mini-publics
• Citizens are tasked with helping to resolve a pressing problem
• This group of citizens is a small group who are randomly selected from a
local, regional or national community.
• The group spends a generally long period of time learning about and
deliberating on a policy issue from different angles.
• Citizens are asked to deliberate on behalf of their community with the aim
of reaching a consensus or compromise.
• The group produces concrete recommendations for decisionmakers, who
then respond directly and publicly to the proposals.

www.thersa.org
Selected case studies
Citizens’ Assembly on Social Care Irish Citizens’ Assembly

www.thersa.org
The Citizens’ Economic Council programme
Our motivation:
Polarised debates undermine the quality of public discourse on the economy
and our democracy.
Our hypothesis:
‘When citizens are effectively engaged in economic policy, they gain greater
awareness of economic issues, are more empowered to influence the economy
and can help to strengthen both the quality and legitimacy of policy making.’

www.thersa.org
Structure of deliberation days

www.thersa.org
• Fairness
• Social Justice
• Rights & responsibilities
• Innovation for social good
• Accountability and transparency
• Sustainability (environmental, social and
economic)
• Citizen engagement and empowerment
• Devolved power and decision-making
A citizens’ economy is one which secures:
The Citizens’ Economic Charter

www.thersa.org
• They want greater transparency
• Diversity brings legitimacy and
effectiveness of policy making
• They want engagement at
different levels
• Trust comes from action, not just
understanding
What council members told us

www.thersa.org
• Clear benefits for the citizens
involved in the process
• Potential to build legitimacy of
policymaking
• Deliberation has a role to play in
building a stronger democracy
Andy Haldane, Bank of England, with Patricia Wharton, Council member
Our reflections

www.thersa.org
www.youtube.com/theRSAorg
@thersaorg
www.thersa.org
www.linkedin.com/company/royal-society-for-the-
encouragement-of-arts-manufactures-and-commerce-
the-rsa-
www.facebook.com/theRSAorg

One London: building a social licence
Dr Malcolm Oswald
Director, Citizens Juries c.i.c.
Honorary Research Fellow in Law, University Manchester

Outline
• Citizens’ juries on data privacy / health data sharing
• So what?
– Why do citizens’ juries?
– Criticisms and limitations
– What else do you think should be done in London to
engender trust and build “social licence”?

What is a citizens’ jury?
• Deliberative democracy
• Jefferson Center method
• Born in the USA, alive and well e.g. in Australia
• Similar to e.g. Irish citizens’ assembly

Citizens’ juries about patient records
• 2 3-day juries on: to what extent should patients control
access to patient records?
• 2 4-day juries for: Connected Health Cities in November
2016 on proposed and potential uses of patient data
• 1 3-day jury for Office of the National Data Guardian on
“reasonable expectations” in January 2018
• 1 3-day jury in June 2018 on using free-text data in
patient records for research
• Later this month...

Citizens’ juries about patient records
• Video from:
– One of 2 juries run in January 2016 on:
“To what extent should patients control access to
patient records?”
– post-jury workshop

What did the juries do?
• Over 4 days:
– Addressed 6 questions, about planned and potential uses of
health data
– Heard from 8 witnesses
– Group exercises and deliberations
– Voted on jury questions
– Joint conclusions
– Developed a jury report in situ with facilitator
• Same process, facilitators, expert witnesses for both
Manchester and York – different jurors

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)
• 694 applicants through various sources including Indeed
• Paid £100 per day + expenses

Who was involved?
• Commissioned and funded by CHC
• Juries designed by Jefferson Center and me
• Jury questions developed with CHC
• 2 facilitators:
– Kyle Bozentko, Jefferson Center, Director
– Dr Vicky Chico, Lecturer in Law, University of Sheffield
• Oversight panel monitored and reported potential bias:
– Ian Inman
– Murat Soncul
– Joanne Bailey
• 8 expert witnesses on e.g. Health records, law, ethics, for and
against data sharing

Some findings from these 2 juries
• Juries answered 6 questions with reasoning
• People tended to be more accepting of health data sharing
to both private and public sector after the jury process
• But only where they see a public interest in the data sharing
• People bring their prior understanding (e.g. of A&E
services) to the process
• When provided with relevant information and a chance to
deliberate with their peers, many jurors changed their mind

Very willing Fairly willing Don’t know Fairly
unwilling
Very
unwilling
How willing or unwilling would you be to allow your medical
records to be used in a medical research study? The information
given to researchers would not include your name, date of birth,
address or any contact details.
“Filter question” for November juries
Manchester Jury

unwilling
Very
unwilling
End-of-jury questionnaire answers from Manchester
Manchester Jury
N=5
N=13

unwilling
Very
unwilling
York Jury
N=9
N=9
End-of-jury questionnaire answers from York

What participants say afterwards…

Why do citizens’ juries?
• Public bodies/programmes like One London make
decisions that affect others:
– Often complicated
– Based on value judgements and evidence (few
organisations state values)
– Juries add legitimacy: bring public values into public
policy
– Engage citizens in “slow thinking” with the evidence
balancing competing values
• But no panacea – one piece of the jigsaw
• What are your criticisms and limitations of citizens’
juries/councils?

Criticisms
• Not perfectly representative or random sample
• Potential for bias:
– amongst commissioners & organisers (conscious,
unconscious)
– Amongst participants (but evidence and “slow
thinking” reduces participant bias)
• Group think
• Results may be ignored by jury commissioners
• Citizens are unelected and unaccountable

Limitations
• Small number of people (e.g. no statistical significance)
• Not open to all Londoners – what about other voices?
• On its own, would not raise awareness across London
• Would not fulfil NHS requirements of public consultation
• Does not target special groups e.g. vulnerable people

Group work: questions for you
• How should the criticisms and limitations be addressed?
• What / what else would you do to create a social licence
for One London to operate?

What else? Some thoughts from me
• Give everyone who wants the chance to speak e.g.
Town hall meetings
• Find out what a larger cross-section of the public believe
(e.g. survey with statistical significance)
• Do targeted work with special interest groups
• Engage citizens in both value judgements and design
• Role for experts and lobby groups?
• Tell as many people as possible (but recognise the
limitations)
• Be transparent
• Use the outcomes to inform your decisions

To conclude…
• Citizens’ juries help public bodies understand what a
cross-section of the public think about complex policy
questions
• Citizens often change their minds
• People tend to be more accepting of health data sharing
to both private and public sector after the jury process
• But only where they see a public interest in the data
sharing
• Citizens’ juries are one valuable piece of the jigsaw

More detail available…
• Jury booklet, videos, jury materials etc.
• herc.ac.uk/citizens-jury
• connectedhealthcities.org/get-involved/citizens-juries/
• citizensjuries.org

#OneLondon
One London Local Health and
Care Record Programme
How are we going to organise
ourselves across London?

#OneLondon
Enabling projects
Other digital projects
(e.g. GP Online)
59
NHS England (National)
MOU£
LHCRE Programme Board
London Digital Board
Mandate£
NWL NCL NEL SEL SWL LAS
MOU
£
MOU
£
MOU
£
MOU
£
MOU
£
MOU
£
London
Capital
Committee
STE
Having won we now need to setup the programme!! The accountability
for funding is based on MOUs…but the ‘governance’ is much broader
In a sense, the accountability for LHCRE funding and delivery is straightforward and
linear, our challenge is to enable One London coordination in the delivery: who and how
we decide to set the parameters of design and investment, and how we link to other
funding, initiatives and decision-making across the capital
The LHCRE programme forms part of a
wider portfolio of ‘digital mobilisation’
programmes that is overseen by the
London Digital Board

#OneLondon
Ubiquitous
sharing at point
of care
Normalised data
layer for alerts
and proactive
care
Patient access
and control
LHCRE Goals AdvancedDevelopingBasic
Level of digital maturity
This setup phase should help STPs to describe what the
maturity spectrum looks like and to assess their ‘as-is’ position
61
STP leads can use this grid to describe
the spectrum of capabilities from basic-
to-advanced; and then plot the ‘as-is’
position as part of a self-assessment

#OneLondon
Enabling
project 1
STP A
STP B
STP C
STP D
STP E
Pan-London
/ HLP / CSU
Project lead is responsible
for convening the working
group, virtually (e.g. using
Slack etc) or in person, and
sharing developments
across STP areas
A nominated lead
assumes a
responsibility for the
enabling project
Each participating STP
areas nominate a lead
to be part of the
working group
• Distributed leadership for
enabling projects, with
sufficient backfill to allow
involvement of STP teams
• Do work once where it
makes sense to have
scale, do it locally where it
requires on the ground
knowledge and
relationships
• Involvement of other
expert advisers in the
project work
• The process should help
build understanding and
ownership within STPs
What
Enabler Projects
Who
LHCRE Operational Leads
How
Principles and outputs
We will setup enabling projects that bring together STP (& other)
leads to make shared decisions about £, IG and engagement
Other
Organisations
Where there are other
relevant experts, (e.g.
Understanding Patient
Data etc.) these should
be included in some
project structure (e.g.
advisory group)
Informationgovernanceframework
Informationarchitecture(DigitalArchitectureAuthority)
Infrastructureandconnectivity
Investmentframework
62

#OneLondon
Demo
project 1
STP A
STP B
STP C
STP D
STP E
Pan-London
/ HLP
Demonstrator Lead is
responsible for convening
the working group, virtually
(e.g. using Slack etc) or in
person, and sharing
developments across STP
areas
A clinical lead assumes
a responsibility for
delivery of the
demonstrator project
Other participating STP
areas nominate a
clinical lead to be part
of the working group
• Distributed clinical
leadership for
demonstrator projects
• Involvement of people with
lived experience
• Creation of use cases and
personae to illustrate why
it is important and how it
needs to be designed
• Working group approach,
using agile methods to
test, learn and improve
• Establishing the basic
information requirements /
specifications to share
with Architecture Project /
Design Authority
What
Demonstrator Projects
Who
LHCRE Operational Leads
How
Principles and outputs
We will also mobilise generalizable projects, with distributed local
clinical leadership embedded in STP transformation projects
Clinical
Networks
Where they relate to a
demonstrator project,
some interaction with the
appropriate London
Clinical Network is
desirable
UEC and 111
record visibility
Care Homes
connectivity
LTC ID: frailty
flag and AF
WSIC
development
CMC
IMPARTS and
PHR
Intelligence:futureBI
63

#OneLondon
‘Team captains’ for work stream should be drawn from across STPs;
we will convene nominated leads as part of a LHCRE ‘SLT’
Digital
Board
SWL
SEL
NEL
NCL
NWL
Pan-London
/ HLP / CSU
Clinical
Networks
IG
Info arch-
itecture
Infra-
structure
Investment Involve
FOR ILLUSTRATION ONLY
LHCRE Operational LeadsLHCRE SROsLHCRE secretariat
LHCRE
Senior Leadership Team (SLT)
London Digital
Board
WSIC
Frailty
& AF
Care
Homes
UEC
PHR &
IMPARTS
CMC
Future
BI
64

#OneLondon
Full setup: as work begins we will need to ensure that effective
interactions avoid ‘enablers’ becoming divorced from ‘demonstrators’
65
IG
Infoarch-
itecture
Infra-
structure
Investment
Involve&
engage
WSIC
Frailty
& AF
Care
Homes
UEC
PHR &
IMPARTS
CMC
Future
BI
e.g. Clinical examples and
leadership will provide
important inputs to
successful engagement
and IG framework
development
Technical architecture and
underpinning connectivity
will be determined by the
types of information
sharing that is required to
support the desired
clinical transformation
The benefits of ‘digital’ will result from the
quality or efficiency improvement within
transformed clinical services; and there will
be several other sources of transformation
funding that need to be aligned to leverage
the most from the LHCRE funding

One London conversation workshop 18 July slide deck

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