Carolyn Canfield
citizen-patienthonorary lecturer, Faculty of MedicineUniversity of British Columbia
BMJ-IHI International Forum on Quality and Safety
April 23, 2015
disclosures• volunteer without income
• expenses and/or honoraria
from publicly-funded, non-profits
(Canada, Sweden, Norway, Denmark, UK, USA)
ERAS Society
• NO commercial interests or sponsors
S
Nick Francis1929 - 2008
Closed
Hierarchical
Organization
Network of
Relationships
Patient Engagement
Why bother??
BMJ 2013;346:f2614 doi: 10.1136/bmj.f2614 (Published 14 May 2013)
“the citizen-patient”
Why engage citizen-patients?
to improve the quality of healthcare
to inform and educate patients and the public
to build confidence with the public
to make better use of health care resources
to improve how health services are evaluated
to transform healthcare culture
Adapted from Cartwright and Crowe, 2011
We’re all patients, Carolyn!
So, David.
What do patients think?
“What, all of them?”
Green S., Involving people in healthcare
policy and practice. 2007. Oxford: Radcliffe.
~ David Gilbert
Recruiting
• Seek the right fit of skills and attributes
• “Strength in Diversity”
• Your citizen-patients are likely nearby
• Build on small successes
• Enthusiasm is contagious
• Invest in valued relationships
www.healthinnovationforum.org/
www.healthinnovationforum.org/
www.1000livesplus.wales.nhs.uk/opendoc/224646
Cartwright, J., Crowe, S., (2011).
Patient and public involvement
toolkit. BMJ Books/Wiley-Blackwell.
12 tough questions before you start
The first five…
What are we aiming to achieve?
Where have we got to so far?
What will the citizen-patients get out of it?
Are we prepared to resource it properly?
Why have we not done this before?
Adapted from Cartwright and Crowe, 2011
Involve citizen-patients from the start?
Honest in managing their expectations?
What are our expectations?
Prepared to give up some power?
Prepared to take some criticism?
Next five of 12 tough questions…
Adapted from Cartwright and Crowe, 2011
Commitment to this from the top and the
bottom of the organization?
Long-term change, or one-off effort?
The last of 12 tough questions…
Adapted from Cartwright and Crowe, 2011
www.hpoe.org/resources/hpoehretaha-
guides/1828
www.hpoe.org/resources/hpoehretaha-
guides/1828
Boyd H, McKernon S, Old A. 2010.
Health Service Co-design: working with patients
to
improve healthcare services. Auckland:
Waitemata
District Health Board. October 2010
engagementcycle.org
www.albertahealthservices.ca/PatientsFamilies/if-pf-pe-engage-
toolkit.pdf
www.albertahealthservices.ca/PatientsFamilies/if-pf-pe-engage-toolkit.pdf
speaker
coach
Honorary Lecturer
instructor
advisor
champion
team member
What it means to Patientsand Families AND Staff
skills
respect
awareness
competence
clarity
calmness
accountability
intuition
communications
interdependence
and more!
Really??!
Thank you!
Carolyn Canfieldcitizen-patient
honorary lecturer
UBC Faculty of Medicine
Vancouver, Canada
Achieving prudent healthcare in NHS Wales
Prudent healthcare in NHS Wales
Paul Gimson, National Programme Manager for Primary Care1000 Lives Improvement
Increasing and complex demand on healthcare
• Our population is increasing and getting older
• More people are being diagnosed with one or more long-term health conditions like diabetes and dementia
• Frail and older people increasingly have more complex needs
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The Challenge
In Wales one third of adults or 28% of the population
report living with at least one chronic condition
Of people over 65 yrs two thirds reported having at
least one chronic condition and one third had
multiple chronic conditions
Over three-quarters of people aged over 85yrs
reported having a limiting long term illness
Over two thirds of all NHS Wales resources are spent
treating people with chronic conditions
These figures are expected to grow, however NHS
Wales is tasked with improving quality and reducing
costs
‘Imprudent Healthcare’
• 10% Healthcare interventions associated with harm
• 20% of work done by health service has no effect on outcomes
• Only 18% of time spent in clinical environment offers immediate value –the rest is spent waiting
Achieving prudent healthcare in NHS Wales, 1000Livesi, 2014
Prudent healthcare
“Healthcare which is conceived,
managed and delivered in a cautious
and wise way characterised by
forethought, vigilance and careful
budgeting which achieves tangible
benefits and quality outcomes for
patients.”
Achieving prudent healthcare in NHS Wales
Prudent healthcare
“Healthcare which is conceived,
managed and delivered in a cautious
and wise way characterised by
forethought, vigilance and careful
budgeting which achieves tangible
benefits and quality outcomes for
patients.”
Achieving prudent healthcare in NHS Wales
Establishing the principles
Achieving prudent healthcare in NHS Wales
Dec 2013: ‘Simply Prudent Healthcare’Bevan Commission
Jan 2014: Prudent healthcare in a time of austerity – the Minister’s speech
Four workshops
• 30 delegates
• Patients, managers
and clinicians
• 10 guests
Achieving prudent healthcare in NHS Wales
• Identify opportunities
• Indicate methods
• Comment on principles
Four workshops
• Adult pain management
– Cardiff & Vale University Health Board
• Medicine prescribing
– Cwm Taf University Health Board
• Adult hearing loss, dizziness and tinnitus
– ABMU Health Board
• Knee and hip problems
– Aneurin Bevan University Health Board
Achieving prudent healthcare in NHS Wales
Review of the workshop
Achieving prudent healthcare in NHS Wales
Principles revised
Achieving prudent healthcare in NHS Wales
• Do no harm.
• Carry out the minimum appropriate intervention.
• Organise the workforce around the “only do, what only you can do” principle.
• Promote equity.
• Remodel the relationship between user and provider on the basis of co-production.
Revised principles in Ministerial statement, July 2014
Principles revised – again!
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www.prudenthealthcare.org.uk/
Implementing prudent healthcare
1. Greater focus on prevention, promoting wellness and healthy behaviours, improving community cohesion
2. Prudent Prescribing – tackling de-prescribing and polypharmacy
3. Shared goal setting and shared decision making (better outcomes & use of evidence)
4. Working together across primary and secondary care – alternatives to referral, improving access to specialists & patient experience
5. Refraining from interventions with low clinical value and no robust evidence base (e.g. NICE do not do)
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Some further Thoughts on Prudent Healthcare
• It directly involves patients in designing their own care and participating in co-creating services – and taking responsibility
• It focuses on obtaining the best outcomes for patients, discarding practices which are of marginal or no benefit, or may even cause harm (EXNOVATE!!!)
• It is allied with a global movement seeking to reduce harmful overmedicalisation
Prudent healthcare – a wider perspective
Achieving prudent healthcare in NHS Wales
• Choosing Wisely Canada– Targeting unnecessary tests,
treatments and procedures
• Better Value Healthcare
https://www.youtube.com/watch?v=FqQ-JuRDkl8
How?
• Leadership
• Organisational development
• Clinical Engagement
• Values driven working and recruitment culture
• A greater emphasis on patient-set goals and priorities
• Exploring lifestyle interventions rather than medical responses
• Understanding (and delivering) what matters most to people who use the service
• A focus on PERSON CENTRED CARE
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PERSON CENTRED
CARE
SHARED
DECISION
MAKING
CO-
PRODUCTION
SUPPORTED
SELF
MANAGEMENT
PARTNERSHIP
WORKING
Co-Production and Prudent Healthcare
1. Education Programme for Patients
2. Learning in Action – A national co-production / partnership programme
3. Prudent Interactions Collaborative
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What skills do individuals need?
Goal setting and planning
for action
Problem solving
Follow up
Pacing and balancing life
Communication – with
family, friends and
effectively with clinicians
Agenda setting
Making choices, deals and
decisions.
Relaxation & mindfulness
Managing setbacks
Handling and challenging
difficult emotions
Planning to stay well
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What does EPP Cymru Offer
A choice of health and well being courses for adults
•Health & Well Being course - Chronic Disease Self
Management Programme
•A course for carers - Looking After Me
•A short half day course - Introduction to Self
Management
•Diabetes Self Management Programme
•A course to manage breathlessness
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EPP - Benefits for Participants
Increased confidence, self-esteem and feeling of self-
worth
Improved ability to cope with symptoms
Develop more effective relationships with those caring
for them
Manage their condition more effectively, working in
partnership with healthcare professionals
Use new skills and knowledge to improve quality of life
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Prudent Interaction Collaborative
• Bringing together Shared Decision Making and Supported Self-Management
• A structured programme to clinical teams over 3 learning sessions complemented by ‘action periods’ between sessions
• Impact on patients measured using the National Service User Experience core questions at intervals throughout
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Learning in Action
• A programme to support the practical application of co- production values into health and social care delivery across all sectors and in so doing build a critical mass to ensure the spread of co production at community level.
• Builds capacity through a ‘Train the Trainer’ approach with a focus on Shared Decision Making
• Supported and measured by an IT Platform (Sensemaker)
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Learning in Action
WHY?
Whole System Integrated Care
Living longer
and living well
Co-designing integrated care policy with patients and carers:
the NW London experience
Professor Lis PaiceMichael Morton,
Co-Chairs of Embedding Partnerships NW London Whole Systems Integrated Care
Living longer
and living well
Introduction to North West London (NWL)
• Diverse, aging population
• Pockets of deprivation
• Variable primary care
2 million people
£4bn annual health & care spend
400+ General Practices
10 acute & specialist hospital trusts
2 mental health trusts
2 community health trusts
Living longer
and living well 73
• Integrated Care in NW London
Pilot launched in 2011
Tackling: -Fragmented careUnreliable primary careVariable patient experienceSteadily rising unplanned admissions
Provider partnershipGradual involvement of patient group
Living longer
and living well
NWL ‘Whole Systems’ Integrated Care (WSIC) - 2013
Family
Community
as assets
Carer
Community
care
Social care
Mental
health
Hospital
Housing
Voluntary
sector
Employment
Education
Assistive technology
Underpinned by:• Information systems• Governance• Reimbursement
Held together by resilience
Supported to self manage
General Practice
Other neighbouring
practices
Patient’s
own GP
practice
Community pharmacy
Living longer
and living well
Recruitment and support
• Nominations• ‘Role profiles’• Information • Expenses, briefings,
admin support• Finding a name –
‘Lay Partners’• Training day
“The Effective Lay Partner” workshop 2013
“After today’s workshop I am going to resume
pushing for change on issues about which I feel
strongly”
“My key insight from the day was how
important it is to adopt a collaborative
approach in resolving difficult issues”
Living longer
and living well
WSIC programme governance structure: co-design phase
NWL Integration Board
Programme Board
Embedding Partnerships
Communications and PMO
Programme Executive Group Programme Team Points of contact
Population and Outcomes
working group
GP Networks working group
Provider Networks
working group
Informatics working group
Commissioning & Finance
working group
WSIC Lay Partners ForumWSIC Lay Partners
Advisory Group
Co
-de
sign
wo
rkin
g gr
ou
ps
= Lay Partner representation
Living longer
and living well 77
Early lessons
77
• Need to prepare and educate professionals • ‘Touchstone’ setting out principles of coproduction• Lay Partners more effective in pairs than solo• Lay Partners need to meet as a group • Realism about time commitment• Equity of professional support
Living longer
and living well
Impact of Lay Partners
• Lay Partners bring courage and encouragement
• Whole life assets – not just experience of ill health
• Push for and maintain ‘blue sky’ thinking
• Hold projects to account• Maintain a healthy tension
between delivery and co-design
• Bring patients to the centre of policy
• Embed insights and expertise from different backgrounds
• Influence and challenge language and behaviour
“The essence of Whole Systems is about being inclusive – we need to reach out to a broad spectrum of provider partners.”
“It did feel to me like a culture changing moment, to seek to represent our work in an accessible and people focused way… but it is a challenging and time consuming and will take real commitment!”
The NWL Whole Systems Integrated Care toolkit
“Lay partners are the guardians of the vision”
Living longer
and living well 7979
Living longer
and living well
Issues & challenges
Issues that have arisen• Pace and scale pressures – need for significant commitment (unpaid)• The need for Lay Partners to have both knowledge and confidence for effective
challenge• Lack of diversity among the Lay Partners - can they speak for everyone?
Future Challenges• Roll-out to local areas – are enough patients and carers skilled and motivated to contribute?• How do we get new people in while retaining the experience and learning of the original team?• How do we make sure the vision of co-production is not lost in the pressure to deliver?• How do we move from ‘pilot’ to ‘the way we do things round here’?