“Nothing for me, without me”

Winning Conditions for
Patient and Family
Engagement
Disclosure
• I have no conflict of interest to declare
With Me
PERSON-CENTRED PERSPECTIVE
ESTHER GREEN
DIRECTOR, PERSON -CENTRED PERSPECTIVE
PRESENTATION OBJECTIVES
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Outline the importance of engaging individuals and family in
health system and cancer control system planning
Discuss promising practices to accelerate a person-centred
cancer control system.
Share lessons in shifting culture
WHAT IS PERSON-CENTRED CARE?
The individual needs to be at the centre of their care
The provision of care that is respectful of, and
responsive to, individual patient/family preferences,
needs and values
I AM RESPECTED,
I AM HEARD,
I UNDERSTAND,
I AM INVOLVED
The core ideas in person-centred care are dignity,
respect, communication, information sharing,
collaboration, participation and shared-decision-making
WHAT IS PERSON-CENTRED CARE?
It means working with individuals
rather than doing things to
or for the person. In essence,
person-centred care implies the
sentiment, “Nothing about me,
without me” and evokes the
picture of seeing the situation
through the eyes of the other
person.
Moving from a provider focus to a
focus on the patient/person
requires a shift in culture in health
care.
“I firmly believe
understanding the lived
experiences of patients
and families are vital to
creating a system that
puts the patient first”
Rhonel Biddy
Patient and Family Advisor,
Data Development Committee,
Canadian Partnership Against Cancer
PILLARS OF PERSON-CENTRED CARE
Responsible, responsive and accountable
services and institutions
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Culture and
communications
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Leaders
with clarity
of vision
Supportive
health care
environments
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Resources
available to enable
person-centred
approaches
“I started my career as a nurse and
I’ve witnessed the fundamental way
personal experiences and perspectives
can shape the conversation and
influence the health system. I’m proud
of the Partnership’s approach and
commitment to embedding the
person-centred perspective in all that
we do and to ensuring patients are
equal partners at the table – the
CEOs of their own health care.”
Chris Power
Chair, Canadian Partnership Against Cancer
FACTORS THAT INFLUENCE SUCCESS
OF BUILDING PERSON-CENTRED CAPACITY
Involvement of individuals which includes patients, families, caregivers
Leadership support for the initiative
Strategic (shared) vision
Care for the caregivers through a supportive healthcare environment
Systematic measurement and feedback
Quality of the healthcare environment
Supportive technology
TO EMBED THE PERSON-CENTRED PERSPECTIVE
INTO ALL ASPECTS OF CARE MEANS:
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Improvement in the processes and outcomes of health care
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A requirement of attention at various levels:
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CLINICAL
ENCOUNTER
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PROGRAM
DEVELOPMENT/IMPLEMENTATION
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INSTITUTION/
SYSTEM-WIDE POLICY
LEVEL
Patient Engagement
Frameworks
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Engagement Framework
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Continuum of engagement
Involvement
Partnership and
shared leadership
Levels of engagement
Consultation
Direct Care
Patients receive
information about a
diagnosis
Patients are asked
about their
preferences in
treatment plan
Treatment decisions are made
based on patients’
preferences, medical
evidence, and clinical
judgement
Organizational
design and
governance
Organization surveys
patients about their
care experiences
Hospital involves
patients as advisers
or advisory council
members
Patients co-lead
hospital safety and
quality improvement
committees
Policy making
Public agency conducts
focus groups with
patients to ask opinions
about health care
issues
Patients’
recommendations about
research priorities are used
by public agency to make
funding decisions
Patients have equal
representation on agency
committee that makes
decisions about how to allocate
resources to health programs
Source: Kristin L.Carman, Pam Dardess, Maureen Maurer, Shoshanna Sofaer, Karen Adams, Christine
Bechtel, and Jennifer Sweeney, “Patient and Family
Engagement: A Framework for Understanding the Elements and Developing Interventions and
Policies,”Health Affairs 32, no. 2 (2013): 223-31.
National Framework for Consumer Involvement in Cancer Control Government of
Prepare patients and
families to partner with
researchers in designing
and conducting research
studies
Strategy for Patient-Oriented Reseach: Patient Engagement
Framework
Shifting Culture: Lessons
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PATIENT AND FAMILY
PREPARATION
CARE AND SYSTEM
REDESIGN
MEASUREMENT AND
RESEARCH
CLINICIAN AND
LEADERSHIP PREPARATION
TRANSPARENCY AND
ACCOUNTABILITY
ORGANIZATIONAL
PARTNERSHIP
PARTNERSHIP IN
PUBLIC POLICY
Carman KL, Dardess P, Maurer ME, Workman T, Ganachari D, Pathak-Sen E. (2014). A Roadmap
for Patient and Family Engagement in Healthcare Practice and Research
PATIENT AND FAMILY ADVISORS ENGAGEMENT AT CPAC
Embedding a person centered perspective across the cancer
continuum.
By using targeted approaches to improve Cancer Control, we engage Canadians through:
o Advisory Groups
o National Networks
o Patient Panels
o Reviewing and Contribute to Reports
o Strategic planning
o Research
o Resources for Professionals for Improved Practices: www.cancerview.ca
o System Reports
o Partnering with Healthcare Professionals, Cancer Care Organizations and
communities
Survey Results
over
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Network/Committees/Projects
with patient/family advisors
Orientation
ISSUES: FROM STAFF
FROM ADVISORS
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Need for best practices
Recruitment
Engagement
Culturally safe environment
Demographic representation
Accommodation
Preparation
Engagement
Role clarity
Feedback opportunity
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GROUND RULES FOR
DIALOGUE
Express disagreement
with ideas not
personalities
We are all equal.
Leave rank at the door
Share airtime
Listen respectfully especially
when you disagree. Acknowledge
you have heard the others
Stay on topic- connect
to what others have
said
Look for common ground
Understand & learn
from each other
Identify & test
assumptions
Adapted from The Change Foundation
www.changefoundation.ca
Lessons learned
• Clarity of purpose and scope
• Choose the best engagement format and timeframe
to ensure meaningful input
• Expect the unexpected…
• Give participants the tools they need
• Be prepared for lulls and how to navigate them
• Recognition and reporting back
• Build staff capacity
• Identify dedicated champions
Promising Practices
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PERSON-CENTRED ENGAGEMENT IN THEIR CARE
Patient Reported Outcomes (PROs) move beyond basic symptom screening and
empower patients to be active partners in their care
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T0 accelerate PRO implementation across the country, short videos have been created
to increase awareness and uptake of screening for distress
With one geared towards the patients and the other towards clinicians, two-minute
animated videos, presented in English and French, will promote the use of the
Edmonton Symptom Assessment System-Revised (ESAS-R) by highlighting the
benefits for both patients and clinicians
There are currently eight provinces across Canada engaging in efforts to promote the
use of the ESAS-R tool.
Patient Reported Outcomes
Videos: Empowering patients to be
active partners in their care
Symptom and Distress Screening
Assessment, Intervention and Follow-up
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Examples of Screening Tools: Edmonton
Symptom Assessment Scale (ESAS-r) and
Canadian Problem Checklist
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Example of a patient summary report,
reviewed by clinician, following the
completion of the questionnaire….
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Organizational Partnership
• Partnering with patients and families in the design
of processes, policies, and facilities ensures that
healthcare organizations and systems are structured
to better reflect the patient and family perspective
and needs, provide specific opportunities for patient
and family engagement, ensure better outcomes,
and provide better experiences for patients,
families, and clinicians.
Carman KL, Dardess P, Maurer ME, Workman T, Ganachari D, Pathak-Sen E. (2014). A
Roadmap for Patient and Family Engagement in Healthcare Practice and Research.
CANCER
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Examples of Success: CCO
Public Participation in Cancer Screening
Enhancing Communication through Synoptic Reporting
Patients as Partners in Managing Treatment-Related Toxicity
Symptom Management Summit
Making Wait Times Information More Meaningful
Patient Engagement in Funding Reform
Over 3,000 Participants in Patient Education Survey
Enhancing Person-Centred Systemic Treatment
Patient and Family Advisors Help Co-Design Shared-Care
Focal Tumour Ablation Report Released
Measuring Patient Experience at the End of Life
8 Cancer Patient Symptom Management Guides Developed
Ontario Cancer Plan IV
Patients Co-Create Educational Materials to Support
Shared Decision-Making
Co-design is a way of improving healthcare
services with patients
Engage
Change
Plan
Co-design
elements
Explore
Decide
Develop
Waitemata District Health Board, NZ, 2010
Revised Accreditation Canada Cancer Care
Standards
• Revised and evaluated throughout 2015
– Partnership with CPAC
– Close work with the CPQR to add content for
radiotherapy
– Focus on collaboration across cancer care and
integrating services
– Now 1 set of standards – Cancer Care
• Released January 2016  on-site surveys starting
January 2016
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Standards Working Group
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16 Representatives from across Canada
Experts in cancer care and radiotherapy
National bodies, clients, stakeholders
Radiation oncologists, oncology nurses,
medical physicists, etc.
• Accreditation Canada surveyors
• Patient representation
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Standards Content – 10,000 Feet
• Focus on the continuum of care
• Building a service the meets the needs of clients
• Bringing together a collaborative team that is prepared,
supported, and engaged
• Partnering with clients and families
• Partnering with local, provincial, and national bodies
• Safe systemic therapy – from the pharmacy to the home
• Safe radiotherapy – from equipment acquisition to treatment
• A focus on care and client outcomes in quality improvement
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What gets in the way?
• We need to hire more staff and we can’t afford it
• This is really about being nice to people and we
already do that
• This doesn’t relate to me because patient
engagement is someone else’s job
• We are patient-centred already; our satisfaction
scores are good…isn’t that enough?
Fooks et al. 2015
Final words
• Sir Robert Francis, Chair of a health service public
inquiry in England said:
Individual patients and their treatments are what really
matters. Statistics, benchmarks and action plans are
tools. They should not come before patients and their
experiences.
Francis, 2013
Discussion Questions:
References
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Carman, K., P. Dardess, M. Maurer, S. Sofaer, K. Adams and C. Bechtel. 2013. “A multidimensional framework for patient and
family engagement in health and health care.” Health Affairs 32(2):223-31.
Cancer Care Ontario. 2015. Building a Culture of Person-Centred Care in Ontario.
https://www.cancercare.on.ca/pcs/person_centred_care/engagementreport/pccreport/
https://www.cancercare.on.ca/pcs/person_centred_care/engagementreport/pccreportwww.cancercare.o
The Health Policy Partnership. 2014. “The state of play in person-centred care: A pragmatic review of how person-centred
care is defined, applied and measured.” http://www.healthpolicypartnership.com/person-centred-care/
Kaitemata District Health Board. 2010. Health Service Co-Design. http://www.healthcodesign.org.nz/about.html.
Canadian Institutes of Health Research. 2014. “Strategy for Patient-Oriented Research: Putting Patients First. Government of
Canada.
Carman KL, Dardess P, Maurer ME, Workman T, Ganachari D, Pathak-Sen E. A Roadmap for Patient and Family Engagement in
Healthcare Practice andResearch. (Prepared by the American Institutes for Research under a grant from the Gordon and
Betty Moore Foundation, Dominick Frosch, Project Officer and Fellow; Susan Baade, Program Officer.) Gordon and Betty
Moore Foundation: Palo Alto, CA; September 2014. www.patientfamilyengagement.org.
Cancer Australia and Cancer Voices Australia, 2011. National Framework for Consumer Involvement in Cancer Control.
Cancer Australia, Canberra, ACT.
Fooks, C., G. Obarski, L. Hale, and S. Hylmar. 2015. “The patient experience in Ontario in 2020: What is possible?”.
Healthcare Papers 14(4): 8-18.
Francis, R. 2013. Report of the Mid Staffordshire NHS Foundation Trust Public Inquiry.
www.midstaffordshirepublicinquiry.com.
http://www.healthpolicypartnership.com/person-centred-care/
ttps://www.cancercare.on.ca/pcs/person_centred_care/engagementreport/pccreport.https://www.cancercare.on.ca/pcs/person_centred_ca
re/engagementreport/pccreport
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