Building a quality cancer system
Chair: Shiraz Abdulla, Sydney LHD
SYDNEY MEDICAL SCHOOL
Beliefs, behaviours and systems in primary care:NSW findings from the International Cancer Benchmarking Partnership
Jane Young | University of Sydney
Sydney School of Public Health
Cancer Epidemiology and Cancer Services Research Group
Jane Young, Claire McAulay, Ingrid Stacey, Megan Varlow, David Currow
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 cancer4
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
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
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
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%)
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)
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
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
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 indicated due to patient pressure
36 40
I sometimes refer patients due to patient pressure rather than clinical indication
29 31
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
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
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
Access to colonoscopy
16
NSW rural NSW urban VIC rural VIC urban
Public system 14 23 24 18
Privatesystem
79 88 84 96
Proportion of GPs reporting average waiting time of 4 weeks or less:
Proportion of GPs receiving colonoscopy results within 1 week:
NSW rural NSW urban VIC rural VIC urban
37 40 67 68
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
Proportion of GPs reporting time to specialist appointment within 2
weeks
18
Rural Urban
General surgeon PublicPrivate
4685
5894
Gastroenterologist PublicPrivate
3168
5292
Colorectal surgeon PublicPrivate
3869
5091
Respiratory physician PublicPrivate
3666
5587
Thoracic surgeon PublicPrivate
2957
4684
Gynaecologist PublicPrivate
4677
5690
Gynaecologic oncologist PublicPrivate
2752
4877
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
rates for cancer patients
17.1 41.4
Specialist is in directory of cancer specialists 6.4 19.5
Specialist is involved in clinical trials 3.6 11.3
19
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
hospitals/specialists
36 40
GP publications and newsletters 25 41
Directory of specialists/services 26 39
Internet searches 24 29
Cancer Institute NSW CanRefer
website
14 19
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
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
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)
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A Rural ModelCANCER CARE REFERRAL PATHWAY
:
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
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
Background ctd
•Fragmented care
• Increased presentations to ED
• Increased patient & carer stress
•Poor communication between service providers
•Patients lost in the system
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)
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
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
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
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)
Development Ctd
•Development promotional material
•Designed & implemented TV commercial
•Feedback letter template
•Acknowledgement of referral
•Public Launch & implementation of pathway
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
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
Referral Criteria (hard copy) ctdCriteria 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
Promotional Material
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
Referrals prior to PathwaySource 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
Results post introduction of PathwaySource 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
Foundation
1
Flinders Medical 2
Emergency 2
Theatre 1
Outreach 1
Breast Screen 1
19 sources of referral
Total number of Referrals148
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
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)
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
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
Contact Details
•Mobile: 0427064367
•Landline: 08 80801197
•Mobile: 0429984457
•Landline: 08 80801452
Tim Shaw
Sarah York
Nicole Rankin
Deborah McGregor
Sanchia Aranda
Kahren White
Jane Young
Shelley Rushton
Deb Baker
Megan Varlow
Tina Chen
Tracey Flanagan
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
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
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
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'
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.
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.
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.
Priority Setting Workshop
Implement a process of selecting the most significant and measurable success factors for future KPI development
Based on Sydney Catalyst Methodology
Individual Matrix ActivitySignificance Measurability
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.
Success Factor
Criteria
Agree Least
Agree Most
1 2 3 4 5
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
‘Dotmocracy’
Identified Priorities
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
ConclusionFirst 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'
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
Evidence into Practice (T2/T3) Working Group
Tim Shaw (Chair)Nicole RankinJane YoungPhyllis ButowKate WhiteLyndal TrevenaDeb McGregor
Collaborating sites
Sarah YorkPhilip BealeSallie PearsonJane PhillipsJohn SimesPuma 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
Why Implementation Science?
69
Evidence Based Medicine 1990’s - present
Clinical
trials
GuidelinesDiscovery
Translate evidence into Practice –
implementation science
Gap
analysis
Engage system
and clinicians
Apply/evaluate
interventions
Data analytics
Research
30-40% of care not evidence-based
Modest impact on safety metrics
Why lung cancer?
Burden of IllnessHigh 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
Flagship program
Literature review (patterns of care studies previous data
linkages studies etc)
New local data analyses
eg MBS VA and ClinCR
IDENTIFY GAP
Engage with clinical sites- understand environment
Listing of potential target
areas
•Prioritisation at
clinical sites
PRIORITISE GAPS AND ENGAGE TEAMS
Intervention(s)Gather baseline
dataEvaluate impact
Support Implementation studies
Link with local initiatives
APPLY INTERVENTIONS
• 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
Identifying evidence-practice gaps
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.
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.
Priority setting process
75
Priority gaps
Timely diagnosis and referral for treatment
Early referral to palliative care services
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
Fostering Integration of General Practices
with Cancer Services through Improved
Communication Pathways
Andrew Knight
Fairfield GP Unit
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
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
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
Aim: letters within a week…
Expert reference group – admin, oncologist,IT,
GP practice manager, ML
Microteam meetings
• Rapid improvement cycles to redesign process map
• Dictation to approval
Priorities
1. Sustainable and routine
– Document the new process
– Regular data part of KPI dashboard
Priorities
2. Digital transmission
Currently mail.
Considered fax…
Digital
• The agenda
• Rapidly evolving environment
• Conversation begun
Our strategy
• Mosaic to Cerner
• Cerner to GPs
– “GP communications”
– Argus/Healthlink
– Health E Net
• GP communications
• Plug into what follows
Conclusion
• General practice and cancer services must work
together
• Partnerships required
• Timely communication necessary
• Possible to improve
• E health solutions required
Questions?
Please join us for lunch in the pre-function area
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