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

@HelenBevan #ILN17

IS ABOUT

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“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

@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

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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

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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

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A big debate in social science

Structure versus Agency

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The predominant approach in recent years has been STRUCTUREbut globally there is a big shift towards AGENCY

The design dilemma at the heart of change

Systemic approachesPerformance goalsRegulation CompetitionProgramme ManagementIncentive systems

ActivationPatients Included

CapabilityLeaders everywhere

Social actionSolidarity

Social movements

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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

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Royal Devon and Exeter Hospital

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East Sussex Healthcare

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“Because we want to, not because we have to”

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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

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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

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The implosion of trust

Source: http://www.edelman.com/news/2017-edelman-trust-

barometer-reveals-global-implosion /21

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We are witnessing the collapse of expertise and rise of collaborative sensemaking

David Holzmer

Source of image: ACCA

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“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

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New Public Passion:

a growing global

movement

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

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The NHS Continuing Healthcare Collaborative

approach

The Improvement Community

All local groups

The Development

Group10 local groups The

Test and ScaleGroup

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

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Agency is linked to power

Power is one’s ability to achieve goals

Bertrand Russell

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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

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The 3% rule for change

Just 3% of people in the organisation drive conversations with 90% of other people

Source: research by IC Kollectif

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Which kind of activists are most successful at delivering change?

Lone wolvesBuild 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

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From tokenism to empowerment

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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.

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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 wolvesBuild power by expertise and information — through advocacy, oversight, contributing to committees, public comments and other forms of consultation

MobilisersBuild power by mobilising people – being able to call on large numbers of people to contribute, engage in change and take action

Source: Hahrie Han How Organizations Develop Activists: Civic Associations and Leadership in the 21st Century

@HelenBevan #ILN17

Which kind of activists are most successful at creating agency & delivering results?

Lone wolvesBuild power by expertise and information — through advocacy, oversight, contributing to committees, public comments and other forms of consultation

MobilisersBuild power by mobilising people – being able to call on large numbers of people to contribute, engage in change and take action

OrganisersBuild power by growing leaders – identifying, recruiting and training future leaders in a distributed network: building a community and protecting its strength

Source: Hahrie Han How Organizations Develop Activists: Civic Associations and Leadership in the 21st Century

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 creating agency & delivering results?

Lone wolvesBuild power by expertise and information — through advocacy, oversight, contributing to committees, public comments and other forms of consultation

MobilisersBuild power by mobilising people – being able to call on large numbers of people to contribute, engage in change and take action

OrganisersBuild power by growing leaders – identifying, recruiting and training future leaders in a distributed network: building a community and protecting its strength

Source: Hahrie Han How Organizations Develop Activists: Civic Associations and Leadership in the 21st Century

@HelenBevan #ILN17

Which kind of activists are most successful at delivering change?

Lone wolvesBuild power by expertise and information — through advocacy, oversight, contributing to committees, public comments and other forms of consultation

MobilisersBuild power by mobilising people – being able to call on large numbers of people to contribute, engage in change and take action

OrganisersBuild power by growing leaders – identifying, recruiting and training future leaders in a distributed network: building a community and protecting its strength

Source: Hahrie Han How Organizations Develop Activists: Civic Associations and Leadership in the 21st Century

@HelenBevan #ILN17

Focus on the “We”

“Great social movements get their energy by growing a distributed

leadership”

Joe Simpson

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“Resources” for change

Economic resourcesdiminish with use• money• materials• technology

Social assetsgrow with use• relationships• commitment • communityBased on principles from Albert Hirschman and Marshall Ganz

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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

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• 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

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