Transcript Document

Cancer Care Coordination :
An Australian Perspective
Professor Patsy Yates
Queensland University of Technology
Chair, COSA Care Coordination Working Group
Associate Professor Mei Krishnasamy
Director, Cancer Experiences and Nursing Research
Peter MacCallum Cancer Centre
President, Cancer Nurses Society of Australia
Presentation Overview
• What problem are we trying to fix?
• How has care coordination developed in
Australia?
• What has been achieved from the
establishment of care coordinator positions in
Australia?
• What have we learned from the experience?
The Australian imperative mirrors many of the
issues identified in:
– The stock-take document you have produced
to inform your work
– The Principles implementation document that
have informed your reading for today
– The MoH statements around the 2 key service
objectives:
• Improved experiences
• Reduce inequity and deliver better outcomes
A Need for Reform: Optimising Cancer
Care in Australia Report 2003
• Many places where patient and
families report becoming lost in the
system
• Many patients do not access
adequate care
• Increasing complexity of the cancer
care system
• Growing demand for cancer
services
• Health workforce reforms inevitable
What problem are we trying to fix?
• Negative patient experiences of the systems
of care
• Increasing complexity of care
• The increasing demand for services
• Inequity in access to and outcomes from
care
• The need for workforce reform
What has been the response in Australia?
• Care Coordinator positions developed as a
solution to the problem
• Emphasis placed on multidisciplinary team
as a key to improved coordination
• Both initiatives embedded in a system
approach to improving coordination
However each jurisdiction has developed its
own model and approach to reform
Before we start: Some underlying
concepts and principles
• To be effective care coordination requires action at
a number of levels
• There are a number of interventions that can
achieve improved care coordination
SO
Establishing a position dedicated to improving care
coordination is one potential strategy to achieve
coordinated care
Care coordination is everyone’s business
How has the care coordinator
role developed in Australia?
Key Developments: 2006 COSA
Workshop
• To define the problem of care coordination
• To provide some context for exploring a
range of strategies for achieving care
coordination at the system, organisational,
team and individual level, including the role of
care coordinators
• To review evidence and experiences with
care coordinators, from the perspective of
consumers, care coordinators, health care
teams and policy makers
2006 Care Coordination Workshop:
Issues Identified
• The consumers’ experience and engagement
• The limited integration of primary care
providers
• The need to support all health professionals to
contribute to care coordination
• The specific support needs for health
professionals appointed to dedicated care
coordination roles
• Need to integrate coordination roles within the
team and broader system-level strategies –
your recommendation re placement in DHBs
2006 Care Coordination Workshop:
Principles Identified
• Patient focus: Care coordination should
– be patient, carer and family-centred;
– be a key focus across the entire cancer
journey**;
– enable patient choice (to not receive care
coordination)**
– improve patient access to services in a
timely way;
– address equity of access;
– improve care outcomes.
2006 Care Coordination Workshop:
Principles Identified
• Team focus:
– Care coordination takes a multidisciplinary
team approach
– Is inclusive of medical and allied health
professions in both tertiary and primary
settings,
– And includes management and
administrative staff.
2006 Care Coordination Workshop:
Principles Identified
• Systematic approach: Care coordination should
– be evidence-based;
– be sustainable and supported;
– take a system-based approach;
– be capable of use across different platforms,
including public and private systems,
metropolitan and rural and remote
geographical settings and various care
settings;
– be built on a robust evaluation
framework.
Key Developments: 2007 COSA Care
Coordination Workshop
• Purpose:
– To define expected outcomes from care
coordination
– To discuss methods for evaluating the
health and economic outcomes and
benefits of care coordination
2007 COSA Care Coordination
Workshop
• Outcomes
– A shared understanding of coordinated cancer
care and the expected outcomes that it will
achieve for patient, organisational and systems
level perspectives
– Discussion as to how the planned outcomes
might be evaluated
– An agreed action agenda
Care Coordination Outcomes – Patient Level
Outcome
Detail
Every patient is aware of
their pathway of care
Every patient, irrespective of demographics and
health service delivery setting:
• knows what will happen to him/her from the
point at which symptoms are reported/detected
• can identify a key point of contact at each
stage in the journey
• is provided with consistent information
throughout their journey.
As a result, patients will have increased confidence
in the system.
The time from diagnosis to
treatment is appropriate
The timing of treatment is efficient, appropriate and
takes account of patient preferences.
The patient experience is
positive
Every patient feels valued, in control and
respected.
Care Coordination Outcomes – Service Level
Outcome
Detail
A clear pathway is defined
for each patient, and
information moves with the
patient through the system
Key elements in the pathway include:
 structured interdisciplinary communication
 an evidence-based approach.
There is an effective
multidisciplinary team
• An effective multidisciplinary team is one in which team
members have the necessary expertise for managing the
patient’s cancer, and in which team roles are clearly defined
and interactions are effective and of a high quality.
• Team membership may vary according to the stage in the
patient journey.
• It was noted that membership of an effective team may lead to
improved satisfaction for participating health professionals.
Transfer points are well
managed across networks
and sectors
The process for transfer of care at each stage of the patient
journey is clear and well managed. Key elements include:
 knowledge by health professionals of relevant contacts at
primary and tertiary levels
 provision of relevant information at the point of transfer
 clear definition of entry and exit points to the pathway.
Outcomes – Funder Level
Outcome
Detail
More patients are cared for by an
effective multidisciplinary team
Includes increases in referrals to
multidisciplinary teams as well as increased
numbers of effective multidisciplinary
teams.
Patients receive appropriate
treatment
Improvements in treatment will include:
 improvements in time to treatment in
line with recognised benchmarks
(taking account of patient preferences)
 reduced variation in treatment.*
Knowledge of and access to
services, especially primary care, is
improved
Variation and duplication of service
provision is reduced*
Key Developments: 2008 COSA Care
Coordinator Survey
• Purpose:
– to elicit information around scope of
practice, work experience, referral
pathways and learning and support
preferences for Cancer Care Coordinators
– to obtain feedback on the appropriateness
of specific outcome indicators identified in
the 2007 COSA Workshop
COSA Care Coordinator Survey
• Population and Sample:
– COSA Members who self identified as being in a
dedicated care coordinator role
• 116 valid respondents – 42% (n=49) from regional/rural settings
– 58% (n=67) from metropolitan settings
• Instrument:
– Developed by COSA Care Coordinator Working Group
• Procedure:
– Email sent to all COSA members, with link to the web
survey
– Instructions inviting COSA members in dedicated care
coordinator roles to participate in the survey
Findings
• People in care coordinator roles are:
– most often experienced nurses (96%)
– new to the role** (53% in the role for <2yrs)
Links to the development of a NZ CC training
program – with focus on change management
and process mapping
– Clinical experience and expertise
– Communication skills
– Supportive care needs screening
• Significant variation exists in scope of
practice for Cancer Care Coordinators.
– Role incorporates direct clinical care,
psychosocial support and administrative
functions
– On average, more time spent on activities
relating to education and support of
individual patients, and less time spent on
activities that might reflect more systemic
or team coordination activities
Of note
• A minority reported a formalised approach to
orientation role (less than 37%) or ongoing
clinical supervision (less than 34%).
Key Developments: 2010 Meeting of Cancer
Nurse Leaders regarding Outcomes
• Being able to clearly demonstrate the contribution made
by Cancer Care Coordinators is affected by many
factors
– Outcomes occur at various levels, e.g.
patient, provider system and for short
intermediate and long term
– Cancer Care Coordinators may not influence
all outcomes of patient care. The team factor
may influence the outcome
– Selection of measures depends on the
context in which the cancer care coordinator
is working and the nature of the intention.
2010 Meeting of Cancer Nurse Leaders
on Outcomes
• Recommendations:
– Seek a standard measurement for the patient
experience to provide administration and
clinical feedback
– Routine data can be collected from clinical
encounters
– Measurement at the provider and system level
may be best handled at two yearly intervals
– Try to bench mark against other similar
centres.
What has been achieved
from the establishment of
care coordinator
positions in Australia?
Evaluation Reports
• Evaluation of the state-wide Cancer Care
Coordination Service in Queensland (not yet
available)
• Evaluation of Cancer Nurse Coordinator
Roles at Peter MacCallum Cancer Centre
(available as web document)
Evaluation Reports – Some Limits
• Mostly retrospective designs
• Samples are limited
• Models vary making comparisons difficult
Peter Mac: 2009
• The specific objectives of the evaluation included:
– Clarifying the components of the NC role.
– Describing the current NC roles through
engagement with key stakeholders in nursing,
medicine and allied health.
– Describing patient and family experiences of NC
involvement in their care.
– Exploring the training and development needs of
nurses performing the NC roles.
– Making recommendations about the future
development of nursing roles
Key Findings
• NCs are highly valued by MDT members,
patients and families
• The NCs roles are poorly articulated and
defined
• The title Nurse Coordinator implies a role
characterised by pathway management
rather than advanced nursing practice
• The NCs exhibit several key indicators of
clinical burnout including emotional
exhaustion, feelings of inadequacy, chronic
tiredness and a sense of lack of appreciation
by the nursing executive.
• NCs describe little or no succession planning
or backfill framework
•
•
The NCs engage with administrative and
pathway allocation tasks that limit their
ability to function as expert clinical nurses
or engage in evidence-based practice
development initiatives.
The NCs have little control over their
workload and limited capacity to prioritise
their workloads
• In the main, the NCs work reactively to
support not only patients and family members
but also the clinical service within which they
sit
• The NCs have no mechanism or resource by
which to capture data to indicate their
contribution to patient outcomes
Key Recommendations
• Organisational responsibility for actioning an
evaluation framework needs to be agreed to
include:
– What are the optimal outcome measures?
• Barriers must be placed around the role, for
example, chasing up blood results for others
as opposed to checking blood results to inform
NC decisions about patient care.
• An information brochure describing each
individual role should be developed so that
the NCs, as advanced nurses, can distribute
them to new MDT staff and patients as
necessary.
o Review the outpatient area and identify key
common concerns. For example, no available
room for NCs or nurse led clinics to function
in.
o Conduct NC group planning session annually
– meet/workshop how the role has functioned
over the past year and refine/make goals for
the next year
• A formalised mentoring system should be
established
A national perspective on outcomes–
WA, Victoria, NSW and Queensland
Improved outcomes for patients and carers
• reduced anxiety and distress
• improved understanding of their disease and
treatment
Improvements at service level
• clarifying pathways
• identifying service gaps
• coordination of appointments
• better systems for travel and accommodation
• improved communication between services
Cancer Care Coordination Outcome
Scorecard
Patient experience √
Navigating the journey ?
Reducing inequity X
Achieving efficiencies ?
Care Coordination
Role Evaluation – Summary
1) Substantial variation in the implementation of the role
and role functions
2) Multiple factors influence how the role is
implemented:
• Some services had undertaken mapping and needs
assessment
• Resources available in the facility – some roles
evolved to fill service gaps
• Skills and expertise of cancer care coordinator
• Perception and understanding of the role by the
cancer care coordinator, MDT and organisation
Care Coordination Model – Evaluation
Summary
• Patients have contact with cancer care coordinators
at different points:
– Most commonly come into contact at
commencement of/soon after commencement of
chemotherapy/radiotherapy;
– Many identified the importance of identifying
patients early, and a perceived gap in support for
patients in the diagnostic and surgical phase. The
reasons for this were identified as being:
– Difficulty identifying patient pathways;
– Limited involvement with clinicians in
surgical and diagnostic settings;
– Limited resources.
Model - Summary
• Limited use of specific referral, discharge
criteria or routine post treatment planning,
with many cancer care coordinators indicating
this is an area which needs more attention;
• Some examples of screening and
assessment tools, although use is not
consistent and opinions as to the value they
have varied;
Governance - Summary
• General agreement that standardised
approach to development of CCC service
was beneficial
• Some concerns regarding need to allow local
variation according to service context and
population needs
Recommendations - Role
• State-wide framework for CCC roles be agreed
• Functions focusing on systems improvement be
developed
• Mapping process to establish how roles interact
with systems
• Orientation and regular CPD program be
established
• Templates and standardised communication
and promotion strategies to improve
communication and awareness of role
Recommendations – Models of Care
• Develop clear pathways for entry into and
discharge from cancer care coordination
service
• Develop models which facilitate early entry
and appropriate discharge
Recommendations - Outcomes
• Minimum data set be agreed to record activity
and outcomes using existing IT systems
• Develop systematic process where outcomes
data are used to drive service improvement
Recommendations - Governance
• Strengthen leadership role in determining standards,
providing ongoing support and monitoring of cancer
care coordination services
• Develop strategies for improving communication
between Cancer Leadership Teams, managers and
CCCs
• Support additional opportunities for professional
networking amongst CCCs
What is the Future for Cancer Care
Coordination in Australia?
• There is a role for a key worker
• There will be increasing diversity in how these roles are
operationalised
• The multidisciplinary team’s role in care coordination will
be further developed
• There will be greater accountability and emphasis on
efficiency and equity
• There will more attention to coordination at diagnosis
and following treatment
• There will be a greater emphasis on empowerment
What is the Future for Cancer Care
Coordination in Australia?
• Strong frameworks, principles, pathways and
tools for CCC services need to be developed,
taking a population approach
• Functions focusing on systems improvement
need to be further developed
• Develop systematic process where outcomes
data are used to drive service improvement