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

sandra.turley@health.nsw.gov.au

•Mobile: 0427064367

•Landline: 08 80801197

melissa.cumming@health.nsw.gov.au

•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