Where social movements meet co-design: participation in healthcare innovation and improvement

@HelenBevan #ILN17
Where social movements meet
co-design: participation in healthcare
innovation and improvement
Helen Bevan
@HelenBevan #ILN17

@HelenBevan #ILN17
The Horizons team:
Change agents and change agency
• A small, diverse team of people within
the English National health Service that
supports change agents and builds
change agency
• We tune into the latest change thinking and
practice in healthcare and other industries
around the world
• The team has emerged through years of supporting
change in the NHS and the wider health and care system

@HelenBevan #ILN17
“When we talk of social change, we talk of
movements, a word that suggest vast
groups of people walking together, leaving
behind one way and travelling towards
another”
Rebecca Solnit

@HelenBevan #ILN17
Co-design
Source: adapted from Design for Europe
Source of image: Penny Hagen
• Participatory, co-creating and open
• A wide range of people can make a creative
contribution to formulate and solve problems
• Goes beyond consultation by building and
deepening equal collaboration between users,
patients, families and citizens affected by a
particular challenge
• Users, as experts of their own experience, are
central to the design process

@HelenBevan #ILN17
Where social movements
meet co-design
Engaging the key people not just in mapping and
analysing the problem but also in action to solve
the problem

@HelenBevan #ILN17
Where social movements
meet co-design
Engaging the key people not just in mapping and
analysing the problem but also in action to solve
the problem
A step further: engaging people in action to
solve problems of POWER

@HelenBevan #ILN17
Power is linked to AGENCY
• The capacity of individuals to make their own
choices and to take action in a given environment
• Words that are connected to agency:
• Action
• Activity
• Effect
• Influence
• Power
• Choice

@HelenBevan #ILN17
A big debate in social science
Structure versus Agency

@HelenBevan #ILN17
The predominant approach in recent years has been STRUCTURE
but globally there is a big shift towards AGENCY
The design dilemma at the heart of change
Systemic approaches
Performance goals
Regulation
Competition
Programme
Management
Incentive systems
Activation
Patients Included
Capability
Leaders everywhere
Social action
Solidarity
Social movements

@HelenBevan #ILN17
Makin sure that only people
who should be in hospital are in
hospital
• The number of hospital beds occupied by
patients whose transfer of care has been
delayed should be reduced to 3.5%
• Less than 15% of assessments [for continuing
care] should take place in an acute hospital
setting;
• a performance dashboard is being introduced

@HelenBevan #ILN17
Royal Devon and Exeter Hospital

@HelenBevan #ILN17
East Sussex Healthcare

@HelenBevan #ILN17
“Because we want to, not because we have to”

@HelenBevan #ILN17
Individual AND collective agency
Individual agency:
People get more power
and control in their own
lives: patient activation,
shared decision-making
and self-care
Collective agency:
People act together,
united by a common
cause, harnessing the
power and influence of
the group and building
mutual trust

@HelenBevan #ILN17
Building agency for large scale change
We do not become transformed alone, we
become transformed when we’re in relationship
with others
Hahrie Han
Source of image: Idahoc Community Action

@HelenBevan #ILN17
The implosion of trust
Source: http://www.edelman.com/news/2017-edelman-trust-
barometer-reveals-global-implosion /
21

@HelenBevan #ILN17
We are witnessing the collapse of expertise
and rise of collaborative sensemaking
David Holzmer
Source of image: ACCA

@HelenBevan #ILN17
“Many times experts fail because they are
experts in the past version of the world”
Vikram Khosia

@HelenBevan #ILN17 Source: Jason Leitch and Derek Feeley

@HelenBevan #ILN17
New Public
Passion:
a growing
global
movement

@HelenBevan #ILN17
http://biggerboat.org/exploring-moodocs/
MOODOCs
(Massive, Online, Open, Disease Oriented Communities)

@HelenBevan #ILN17
The NHS Continuing Healthcare Collaborative
approach
The Improvement
Community
All local groups
The
Development
Group
10 local groups The
Test and Scale
Group
16 local groups
1000 participants
£100,000 saved
per meeting cycle
1000 ideas and
contributions in 45
minutes
Designed to engage a mass of contributors right
from the start and make the process of spread
much easier
27

@HelenBevan #ILN17
Agency is linked to power
Power is one’s
ability to achieve
goals
Bertrand Russell

@HelenBevan #ILN17
Jeremy Heimens TED talk “What new power looks like”
https://www.youtube.com/watch?v=j-S03JfgHEA
old power new power
Currency
Held by a few
Pushed down
Commanded
Closed
Transaction
Current
Made by many
Pulled in
Shared
Open
Relationship

@HelenBevan #ILN17
The 3% rule for change
Just 3% of people
in the organisation
drive
conversations with
90% of other
people
Source: research by IC Kollectif

@HelenBevan #ILN17
Which kind of activists are most successful at
delivering change?
Lone wolves
Build power by expertise and information — through
advocacy, oversight, contributing to committees, public
comments and other forms of consultation
Source: Hahrie Han How Organizations Develop Activists: Civic Associations and Leadership in the 21st Century

@HelenBevan #ILN17
From tokenism to empowerment

@HelenBevan #ILN17
Many PFAC members I’ve talked to say that staff
members only ask them to do superficial tasks (like
reviewing patient brochures or food menus) or involve
them in meaningless conversations. It’s not that menus
and brochures aren’t important, but if that’s all you’re
asking your PFAC members to do, you’re not using this
resource to its full potential. Great ideas, organizational
energy, and goodwill may be going to waste.

@HelenBevan #ILN17
Patient leaders as “lone wolves”
“What I am ranting about is the way in which patients are
being streamed into advisory sub committees, the way we are
being used as tokens and to help tick off the right box…..
Where is the attitude that patients are part of the team in
healthcare, that we are partners? Why are we always asked
to participate inside a pre-determined frame? When will we
see co-design of new policies, and ultimately co-production?”
Annette McKinnon

@HelenBevan #ILN17
Patient leaders as “lone wolves”
“What I am ranting about is the way in which patients are
being streamed into advisory sub committees, the way we are
being used as tokens and to help tick off the right box…..
Where is the attitude that patients are part of the team in
healthcare, that we are partners? Why are we always asked
to participate inside a pre-determined frame? When will we
see co-design of new policies, and ultimately co-production?”
Annette McKinnon
Structural issues encourage this
kind of participation

@HelenBevan #ILN17
Which kind of activists are most successful at creating
agency & delivering results?
Lone wolves
Mobilisers
Build power by mobilising people – being able to call
on large numbers of people to contribute, engage in
change and take action

@HelenBevan #ILN17
Which kind of activists are most successful at creating
agency & delivering results?
Lone wolves
Mobilisers
Organisers
Build power by growing leaders – identifying, recruiting
and training future leaders in a distributed network:
building a community and protecting its strength

Strategy for
power
Structure
Types of asks
Communication
More numbers
Centralised
responsibility
Independent
Pitches for action
What do they do differently?
Transformative
leaders
Decentralised
responsibility
Interdependent
Relationships
Mobilising Organising
Source: Hahrie Han (2016) Organising for transformational change

@HelenBevan #ILN17
Which kind of activists are most successful at
delivering change?
Lone wolves
Mobilisers
Organisers
Build power by growing leaders – identifying, recruiting
and training future leaders in a distributed network:
building a community and protecting its strength

@HelenBevan #ILN17
Focus on the “We”
“Great social movements get their
energy by growing a distributed
leadership”
Joe Simpson

@HelenBevan #ILN17
“Resources” for change
Economic resources
diminish with use
• money
• materials
• technology
Social assets
grow with use
• relationships
• commitment
• community
Based on principles from Albert
Hirschman and Marshall Ganz

@HelenBevan #ILN17
At the heart of the issue
Strategic leaders don’t see the resources
that we see in the system as solutions to
the biggest problems
Don Berwick

@HelenBevan #ILN17
• Did we accomplish the goal we were trying to
accomplish?
• Did our community grow stronger? (create
capacity; new power – power we didn’t have
before)
• Did individuals involved in the whole effort learn,
grow and develop their capacity to organise with
others?
How would we know if we are
successful from a social movement
perspective?

@HelenBevan #ILN17 Copyright: <a href='http://www.123rf.com/profile_iqoncept'>iqoncept / 123RF Stock Photo</a>
Beyond top down and
bottom up change…….
Beyond the service lens
through which systems
leaders typically conceive
the problems we’re trying
to solve….
Bringing positive
disruption into the system
for faster change & bigger
outcomes
Disruptive co-creation
Adapted from SOLACE

@HelenBevan #ILN17
COMPLIANT POWERFUL!
CHANGE AGENTS
WANT
TO
MAKE A CHANGE…..
ROCK THE BOAT BUT
NOT FALL OUT?
Join the
• Starts Thursday 15th February 2018
• For 5 weeks
• Every Thursday 15.00-16.00 GMT
• Live webinar
• Recordings available
• Completely free and open to all
• Handbooks and study guides
• Meet fellow change agents from
across the globe
theedge.nhsiq.nhs.uk/school/
#S4Change
@SCH4Change

Where social movements meet co-design: participation in healthcare innovation and improvement

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Where social movements meet co-design: participation in healthcare innovation and improvement