2. Building a quality cancer
system
Chair: Shiraz Abdulla, Sydney LHD

3. Beliefs, behaviours and systems in primary care:
NSW findings from the International Cancer
Benchmarking Partnership
Jane Young, Claire McAulay, Ingrid Stacey, Megan Varlow, David Currow
SYDNEY MEDICAL SCHOOL
Jane Young | University of Sydney
Cancer Epidemiology and Cancer Services Research Group
Sydney School of Public Health

4. Background to ICBP
• Evidence of variations in cancer survival between different
European countries
• Example – rectal cancer : 5-year age-standardised relative
survival
– Switzerland 61%
– England 52%
– Poland 39%
Sant et al, Eu J Cancer 2009
• ICBP formed to try to answer these questions
• Focus on lung, colorectal, breast and ovarian cancer
4

5. ICBP Module 3 aims
• To explore whether differences in primary care systems might
explain variations in cancer survival between countries
• In NSW, to investigate GPs’:
• beliefs about early diagnosis of cancer and their role in the cancer system
• access to diagnostic tests and specialists in the public and private sectors
• self reported practices for patients presenting with suspicious symptoms
• views of resources that could improve the interface between primary and
specialist care
• To compare responses for urban and rural GPs
5

6. Methods
• Online survey of GPs in
– UK (England, Wales, Northern Ireland)
– Scandinavia (Norway, Sweden, Denmark)
– Canada (British Columbia, Manitoba, Ontario)
– Australia (Victoria and NSW)
• GPs’ behaviours measured using case scenarios
• GPs’ beliefs and systems measured using direct questions
• Additional questions in NSW and Victoria:
– access to services in the public and private sectors
– out-of-pocket expenses for patients
– influences on referral practices
– preferences for resources to improve the interface between primary and specialist care
6

7. NSW sample and recruitment
• Random sample of GPs identified from a commercial
list (AMPCo)
• Stratified by urban or regional/rural location based
on ARIA+ classification of practice postcode
• Primer letter, invitation and up to 3 mailed
reminders
• GPs were ineligible if:
– not working primarily in clinical general practice
– provided locum services only
– had died, retired, on extended leave
– no longer in NSW
7

8. Response rate
8
2500 names selected
1250 metro, 1250 rural
(10% not eligible)
2246 eligible
Embedded RCT of
response-aiding
strategies
273 responses (12.2%)

9. Characteristics of respondents
9
Characteristic Rural (N = 140) Urban (N= 133)
n (%) n (%)
Female 61 (44) 62 (47)
Age (years) < 35 14 (10) 13 (10)
35–44 28 (20) 22 (17)
45–54 42 (30) 44 (33)
55–64 52 (37) 39 (29)
≥ 65 4 (3) 15 (11)
GP registrar 10 (7) 8 (6)
Sole practitioner 13 (9) 21 (16)
Part time 44 (31) 54 (41)
Years in general practice
< 3 11 (8) 8 (6)
3–5 18 (13) 10 (8)
6–10 12 (9) 21 (16)
11 + 99 (71) 94 (71)

10. Beliefs about timely diagnosis
10
More timely diagnosis of cancer is important to ensure better outcomes
Agree or Strongly agree
Rural (%) Urban (%)
Colorectal 97 98
Melanoma 96 98
Breast 94 96
Ovarian 89 95
Lung 83 89
Prostate 51 56

11. Beliefs about role in cancer system
11
Agree or strongly agree
Rural (%) Urban (%)
I like to wait until I am sure of a diagnosis before referring to a
specialist
21 17
I am often unclear about when I should refer to a specialist when
I suspect cancer
6 4
Protecting patients from over-investigation is an important part
of my role
44 39
Preventing secondary/specialist care cancer services from being
overloaded is an important part of my role
44 39

12. Influences on management decisions
12
Agree or strongly agree
Rural (%) Urban (%)
Fear of litigation sometimes influences my decisions to order
investigations
38 48
Fear of litigation sometimes influences my decisions to refer 35 43
I sometimes order cancer investigations that I don’t feel are
36 40
indicated due to patient pressure
I sometimes refer patients due to patient pressure rather than
clinical indication
29 31

13. Access to specialist advice within 48
hours regarding investigations for
suspected cancer
13
Agree or strongly agree
Rural (%) Urban (%)
Public system 51 51
Private system 76 89

14. Specialist referral within 48 hours for
patient with suspected cancer
14
Agree or strongly agree
Rural (%) Urban (%)
Public system 36 50
Private system 69 82

15. Proportion of GPs reporting direct
access to GI diagnostic tests (no
specialist referral required)
15
NSW
rural
NSW
urban
VIC rural VIC urban
Upper GI endoscopy 21 30 53 9
Flexible sigmoidoscopy 14 21 29 43
Colonoscopy 21 31 47 78

16. Access to colonoscopy
16
Proportion of GPs reporting average waiting time of 4 weeks or less:
NSW rural NSW urban VIC rural VIC urban
Public system 14 23 24 18
Private
system
79 88 84 96
Proportion of GPs receiving colonoscopy results within 1 week:
NSW rural NSW urban VIC rural VIC urban
37 40 67 68

17. Proportion of GPs who can arrange
colonoscopy with no out of pocket
expenses
17
Rural Urban
Yes, this is easy to organise 25 25
Yes, but with difficulty 51 56
No 19 18
Don’t know 4 2

18. Proportion of GPs reporting time to
specialist appointment within 2
weeks
18
Rural Urban
General surgeon Public
Private
46
85
58
94
Gastroenterologist Public
Private
31
68
52
92
Colorectal surgeon Public
Private
38
69
50
91
Respiratory physician Public
Private
36
66
55
87
Thoracic surgeon Public
Private
29
57
46
84
Gynaecologist Public
Private
46
77
56
90
Gynaecologic oncologist Public
Private
27
52
48
77

19. GPs’ perceived importance of various factors for selecting a specialist
Factor Rural Urban
Previous experience referring patients to this specialist 84.3 90.2
Length of wait for appointment 70 68.4
Patient preference 49.3 52.6
Colleague recommendation 52.1 48.9
Specialist's hospital has good reputation for cancer care 32.1 57.9
Specialist is member of MDT 33.6 51.1
Specialists’ relevant cancer caseload 29.3 43.6
Know specialist personally 32.9 38.3
Out of pocket costs for patients 32.9 34.6
Distance patient must travel 33.6 26.3
Specialist's hospital has good published outcomes/low complication
17.1 41.4
rates for cancer patients
Specialist is in directory of cancer specialists 6.4 19.5
Specialist is involved in clinical trials 3.6 11.3
19

20. Perceived usefulness of resources for
informing about cancer services and
referral pathways
20
Factor Percentage responding “very important”
Rural Urban
Discussion with colleagues 82 76
GP meetings or seminars 60 63
Feedback from patients 41 44
Mailed brochures or info from
36 40
hospitals/specialists
GP publications and newsletters 25 41
Directory of specialists/services 26 39
Internet searches 24 29
Cancer Institute NSW CanRefer
14 19
website

21. Limitations
• Very low response rate
• Participating GPs more positive towards cancer
care than non-responders
• Scope of questions limited due to requirements
of standardised instrument
21

22. Summary
• GPs expressed strong support for timely diagnosis to improve
patient outcomes for breast, colorectal and melanoma skin
cancer, but less for other cancer types
• Almost half of GPs considered that gatekeeping was an
important part of their role
• There were marked differences in access to diagnostic tests
and specialist services between urban and regional/rural GPs
and for patients in the public and private sectors
• Waiting times were one of the most important factors
influencing referral pathways
• These findings can inform future programs to enhance the
interface between primary and specialist care and provide a
baseline to monitor change
22

23. Acknowledgements
• We thank the GPs who participated in the survey, the ICBP
Module 3 team who developed the core questionnaire and
Sigmer UK who developed and managed the online database
• The study was funded by the Cancer Institute NSW
• JY is supported by Academic Leader in Cancer Epidemiology
award number 08/EPC/1-01 from the Cancer Institute NSW
and CM was employed through this award
• Paper reporting embedded RCT of financial incentives to
improve response rate will be published in Journal of Clinical
Epidemiology (in press)
23

25. CANCER CARE REFERRAL PATHWAY
A Rural Model
:

26. Team Members
• Sandra Turley Cancer Care Coordinator (CCC)
Project Lead
•Melissa Cumming Director Cancer & Palliative
Care
•Previous Members:
• Jennifer Carter Psycho-Oncology Counsellor
•Ruby Hooke Psycho-Oncology Counsellor

27. Background
•2008 Loss of visiting Medical Oncology Service
to Broken Hill
•Patients referred directly from GP to metro
centres
•Local cancer services not accessed
•Decreased referrals to CCC
•Poor coordination of care

28. Background ctd
•Fragmented care
•Increased presentations to ED
•Increased patient & carer stress
•Poor communication between service providers
•Patients lost in the system

29. What now?
• Improve integration of care
• Promote role CCC – first point of contact
• Improve communication between providers
• Maintain profile of Cancer Services in BH
• Identify barriers to referral
• Develop and implement Cancer Care Referral
Pathway (CCRP)

30. Method
•Multi step approach undertaken over a 4 year
period
•Step 1 (2009) – successful recipients Innovation
Scholarship NAMO
•Scoping study – service mapping, consultations
with stakeholders, focus groups, consumer
interviews, health advisory board members,
community support groups

31. Findings from Scoping Study
9 findings in total – most significant being:
•Loss of Specialist Oncology Services had a
profound impact upon cancer care
•Lack of awareness of the role of the CCC
•Lack of knowledge of how to access CCC
•High turnover of medical staff and GPs in BH
•People affected by cancer were not aware of
supports available

32. Next Step
• (2011)- Applied for funding to develop and
implement recommendations outlined in
scoping study - application declined
•(2012)– Successful Innovation Grant CINSW
Develop Cancer Care Referral Pathway

33. Developing the Cancer Care Referral Pathway
•Collaboration/consultation with GPs and
Practice Nurses designing both an
electronic/paper version
•Liaison with GP IT providers embedding trial
templates & accompanying referral criteria into
practices including Maari Ma (Aboriginal Health
Service) and Royal Flying Doctor Service (RFDS)

34. Development Ctd
•Development promotional material
•Designed & implemented TV commercial
•Feedback letter template
•Acknowledgement of referral
•Public Launch & implementation of pathway

35. The Pathway Look
•Simple & easy to use
•Located in one electronic folder
•Utilized existing referral letter templates
•Uploaded section B IPTAAS form
•Local pathology & radiology request forms
•External provider request forms

36. Referral Criteria (hard copy)
Criteria Rationale
New Cancer Diagnosis
or
Unclear diagnosis and
treatment plan
• Ensure patient and carers aware of service to
access education and support when needed
• Provide point of contact
• Provide continuity of care
• To access need for ongoing support
• Facilitate links with treating specialist via face to
face consultation of via telemedicine
Travel outside of FWLHD
to access treatment and
specialist intervention
• Provide coordination of appointments and tests
• Facilitate communication between clinicians,
patients and carers
• Provide continuity of care, referral to Metro CCC
• Assist with travel and accommodation

37. Referral Criteria (hard copy) ctd
Criteria Rationale
Unpredicted change in
condition or treatment
plan
• Facilitate new treatment plan with MDT
• Educate patient and carer
• Facilitate communication between clinicians
Admission to ED or
Hospital
• Provide support and continuity of care
• Facilitate communication between clinicians,
patient and carers
• Assess need for community services
Poorly controlled /
multiple comorbidities
• Ensure knowledge of services and
responsibilities of care
• Facilitate communication between clinicians,
patient and carers

38. Promotional Material

40. Remembering the Aim of the Pathway
•Promote CCC as first point of contact after
cancer diagnosis
•Promote role across all sectors ensuring
integrated care coordination
•Raise community awareness of role
•Ongoing engagement with community and
health providers

41. Referrals prior to Pathway
Source Number
Patient/ family referrals 13
Public Hospital 13
GP referrals 6
Oncology referrals 2
Surgeon referrals 3
Community services 1
IPTAAS 5
7 sources of referrals
Total number of
referrals 43

42. Results post introduction of Pathway
Source Number
GP 15
Maari Ma 6
Plastic Surgeon 7
Gastro Surgeon 5
RFDS 3
Gynaecologist 3
Haematologist 2
Self-referral/ Family 40
Oncology 10
Wards 27
RAH 10
Pre-admission 9
IPTAAS 3
Source Number
Leukaemia
1
Foundation
Flinders Medical 2
Emergency 2
Theatre 1
Outreach 1
Breast Screen 1
19 sources of referral
Total number of Referrals
148

43. Outcomes
•Patients not ‘falling through gaps’ - being
referred at diagnosis / more timely manner
•Care is integrated and coordinated between care
providers (local and tertiary)
•CCC can ensure right care is provided in right
place at right time
•Patients/carers feel supported in navigating
cancer treatment system

44. Testimonial
•“…the cancer care coordinator …has given me a
lot more confidence about the process, my
feeling of being back in control of my body,
explaining the recent scan results in terms I can
understand and helped me to overcome
problems with pain, medication and side
effects”
(Heather-patient)

45. Sustainability
•Embedded referral pathway
•Ongoing collaboration/ education
•Backfill for CCC
•Advertising / printed resources continue
•Ownership of coordinated care (eg Maari Ma)
•Formal evaluation of CCRPP with UDRH
•New collaborative partnerships between sectors

46. Transferability
•Cancer Care Referral Pathway is transferable
across small ‘like’ rural / remote communities
• Promotion of the role within the community is
paramount to success
•Components of CCRPP (eg advertising /
electronic referral pathways) transferable to
larger settings

47. Contact Details
sandra.turley@health.nsw.gov.au
•Mobile: 0427064367
•Landline: 08 80801197
melissa.cumming@health.nsw.gov.au
•Mobile: 0429984457
•Landline: 08 80801452

50. Tim Shaw
Sarah York
Nicole Rankin
Deborah McGregor
Sanchia Aranda
Kahren White
Jane Young
Shelley Rushton
Deb Baker
Megan Varlow
Tina Chen
Tracey Flanagan

51. Background
 CI NSW looking to develop Key Performance
Indicators to measure coordinated care
 University of Sydney Commissioned to
undertake a consultative approach to develop
and prioritise success factors as first step

52. Cancer care
workshop
Scoping lit
review
Stakeholder
survey
Consumer
input
Small group refinement
and testing
20 success factors
for coordinated care
Priority setting workshops
Priority factors
CI NSW develop KPIs

53. Coordinated Cancer Care
Success Factors
 Success Factors - relatively broad statements
which collectively describe successfully
coordinated care from a systems, practitioner
and patient POV.
 A number of indicators could sit under each
success factor

54. Example
Success Factor: Patients receive timely &
appropriate care on the pathway from first
presentation to diagnosis and to
commencement of treatment.
Indicator: Time from first presentation to
treatment is recorded and meets recognised
tumour specific benchmark
Indicator: Patient survey indicates time to
treatment acceptable'

55. Coordinated Cancer Care - Success Factors
1. Patients receive best practice care defined by clinical practice guidelines or a
clinical pathway for each tumour group.
2. Patients receive timely and appropriate care on the pathway from first
presentation to diagnosis and to commencement of treatment.
3. Patient care takes into account patient and carer needs and preferences (e.g.
service locations).
4. Patients at elevated risk of disjointed care and poorer outcomes (e.g. CALD,
Aboriginal & Torres Strait Islander) are identified and systems are in place to
ensure care is appropriately managed and coordinated.
5. All patients have a comprehensive care plan that is created jointly by
patients, family and health professionals and that is documented, accessible
by relevant care providers and patients and maintained over the course of
their care.
6. Transition of patients across each point of the care trajectory (e.g. from
diagnosis to treatment) is well managed and takes into consideration the
patient’s physical, social and emotional needs.

56. Coordinated Cancer Care - Success Factors
7. Transfer of patient information (e.g. test results) between members of the
multidisciplinary team is timely and well managed at each transition point.
8. Patients, families and carers receive timely, relevant and appropriate
information at key points along their care trajectory; this may include their
diagnosis, prognosis and intention of treatment (e.g. curative/palliative),
depending on cultural appropriateness
9. Patients have timely referral and allocation to a key contact person to assist
with the coordination of their care.
10. Transfer of information and care between primary and community care
providers and specialist services is timely and appropriate.
11. Patients, carers and families know who to contact for information at
different stages during their care trajectory.
12. All patients are considered for discussion at an MDT meeting in a timely
manner and exclusions are guided by protocols
13. All appropriate team members from core disciplines (including diagnostic,
oncology clinicians, GPs, allied health and supportive care) attend and
contribute at weekly/fortnightly MDT meetings.

57. Coordinated Cancer Care - Success Factors
14. MDT meeting members are made aware of patient concerns, preferences
and social circumstances and MDT meeting discussions consider a patient’s
medical and supportive care needs.
15. The roles and responsibilities of all health care professionals involved in
patients care are communicated and understood.
16. Side effects of disease and treatment are managed in a timely and
appropriate manner by the care team to reduce unnecessary visits to ED
and hospital admissions.
17. Patients are routinely screened for physical, psychological and supportive
care needs using validated tools and referred to required services in an
appropriate and timely manner.
18. Patients are aware of and have access to practical assistance and financial
entitlements as appropriate (e.g. transport and accommodation).
19. Patients receive clear follow-up care plans according to tumour specific
guidelines and appropriate survivorship information.
20. Patients receive timely screening and referral to palliative care services.

58. Priority Setting Workshop
Implement a process of selecting the
most significant and measurable
success factors for future KPI
development
Based on Sydney Catalyst
Methodology

59. Individual Matrix Activity
Significance Measurability
Criteria
Success Factor
Transfer of information
and care between
primary and community
care providers and
specialist services is
timely and appropriate.
Patients receive timely
screening and referral to
palliative care services.
Agree
Least
Agree
Most
1 2 3 4 5

60. Priority Setting Criteria
Significance Measurability
Most likely to impact on
patient outcomes
Could a KPI be developed that
could be feasibly measured and
reported on across the board?
Current data point or system in
place to allow for data collection
(or soon to be)
Data sources
- Electronic database (OMIS/RIS)
-Patient Reported

61. ‘Dotmocracy’

63. Identified Priorities

64. Next steps..
4 x priority setting workshops with
care coordinators
1 x priority setting workshop with
Cancer Council NSW consumer group
Develop initial set of indicators built
around success factors

65. Conclusion
First time success factors have been
identified
Good agreement on priorities across
workshops to date
Approach represents a constructive way
to begin to measure improvement across
the cancer system in NSW'

67. A systematic approach to closing
evidence gaps in cancer care:
The Sydney Catalyst experience
Deb McGregor, Nicole Rankin, Tim Shaw, Sarah York,
Phyllis Butow, Kate White, Jane Phillips, Jane Young, Sallie
Pearson, Lyndal Trevena, & Puma Sundaresan
Sydney Catalyst Translational Cancer Research Centre
University of Sydney

68. Evidence into Practice (T2/T3) Working Group
Tim Shaw (Chair)
Nicole Rankin
Jane Young
Phyllis Butow
Kate White
Lyndal Trevena
Deb McGregor
Collaborating sites
Sarah York
Philip Beale
Sallie Pearson
Jane Phillips
John Simes
Puma Sundarasen
Western NSW LHD: Ruth Jones & team
St Vincent’s Hospital/Kinghorn: Emily Stone, Alan Spigelman & team
Royal Prince Alfred/Lifehouse: David Barnes, Philip Beale & team

69. Why Implementation Science?
Evidence Based Medicine 1990’s - present
Discovery Guidelines
69
Clinical
trials
Translate evidence into Practice –
implementation science
Gap
analysis
Apply/evaluate
interventions
Engage system
and clinicians
Data analytics
Research
30-40% of care
not evidence-based
Modest
impact on
safety metrics

70. Why lung cancer?
Burden of Illness
High incidence &
mortality in NSW
population
Poor outcomes; poor
survival: 14% after 5
years (2008)
Paucity of research
National and State
Priorities
Cancer Australia, Cancer
Institute NSW
Sydney Catalyst:
Local Context
Significant issue for
Catalyst catchment
Clinical leaders and
expertise within Catalyst
membership

71. IDENTIFY GAP
71
Flagship program
Literature
review (patterns
of care studies
previous data
linkages studies
etc)
New local data
analyses
eg MBS VA and
ClinCR
PRIORITISE GAPS AND ENGAGE TEAMS
Engage with
clinical sites
- understand
environment
Listing of
potential target
areas
•Prioritisation at
clinical sites
APPLY INTERVENTIONS
Intervention(s)
Gather baseline
data
Evaluate impact
Support Implementation studies
Link with local initiatives

72. Identifying evidence-practice gaps
• Patterns of Care Studies
• Data linkage studies – registry and administrative
datasets
• Clinical practice guidelines
• Systematic reviews and meta-analyses
• Peer reviewed publications
• Grey literature, including government publications
• Local sources of data: Clinical Cancer Registry data
for one Sydney Catalyst member hospital

73. Evidence-practice gaps
1. Not all people with lung cancer receive timely diagnosis and referral
for treatment; unnecessary delays at the patient, provider and service
levels have the potential to negatively impact on patient outcomes.
2. People with potentially curable lung cancer who will benefit from
active treatment do not always receive it; active treatments including
surgery, radiation therapy and chemotherapy are under-utilised.
3. People with advanced lung cancer who will benefit from palliative
treatment do not always receive it; palliative treatments including
palliative radiation therapy and chemotherapy are under-utilised.

74. Evidence-practice gaps
4. People with lung cancer who are of an older age or with co-morbidities
who may benefit from active treatment do not always receive treatment;
active treatments including surgery, radiation therapy and chemotherapy
are under-utilised.
5. People with lung cancer who would benefit from review at a
multidisciplinary team meeting are not always being reviewed.
6. People with lung cancer have high levels of psychosocial needs which
are not always being met, resulting in poorer outcomes and poorer quality
of life.
7. Not all people with lung cancer who would benefit from early referral
to palliative care services are offered this option, which may result in
poorer symptom control and poorer quality of life.

75. Priority setting process
75

77. Priority gaps
Timely diagnosis and
referral for treatment
Early referral to palliative
care services

78. Flagship Phase II
• Mapping lung cancer care pathways
– Process mapping
– Qualitative interviews (Consumers, GPs and targeted physicians)
– Quantitative data audit (ClinCR and medical records)
• Pilot implementation project to reduce at least one evidence-practice
gap in lung cancer
Draft process map from Orange
Cancer Services meeting

80. Fostering Integration of General Practices
with Cancer Services through Improved
Communication Pathways
Andrew Knight
Fairfield GP Unit

81. The Fairfield GP Unit
Andrew Knight, Siaw-Teng Liaw
SW Sydney LHD Cancer Services
Geoff Delaney
The Ingham Institute
Afaf Girgis
The SW Sydney Medicare Local
Rene Pennock/Keith McDonald
The Cancer Institute of NSW

82. 2 projects
1. Needs analysis semistructured interviews 22 GPs
across the region
– Like cancer services
– Want information/access
– Patient care letters not timely
2. Speed up letters
– Produce them quicker
– Transmit them better

83. Q1. What are we trying to achieve?
Letters in a week.
Q2. How will we know the change is an
improvement?
Mosaic – dictation to approval of letters
Q.3 What changes do we think will make a
difference?
Process map and PDSA/rapid improvement cycles

84. Aim: letters within a week…

85. Expert reference group – admin, oncologist,IT,
GP practice manager, ML

86. Microteam meetings
• Rapid improvement cycles to redesign process map
• Dictation to approval

87. Priorities
1. Sustainable and routine
– Document the new process
– Regular data part of KPI dashboard

88. Priorities
2. Digital transmission

89. Currently mail.
Considered fax…
Digital
• The agenda
• Rapidly evolving environment
• Conversation begun

90. Our strategy
• Mosaic to Cerner
• Cerner to GPs
– “GP communications”
– Argus/Healthlink
– Health E Net
• GP communications
• Plug into what follows

91. Conclusion
• General practice and cancer services must work
together
• Partnerships required
• Timely communication necessary
• Possible to improve
• E health solutions required

92. Questions?

93. Please join us for lunch in the pre-function area