NSW-NBCC National Cancer Data Strategy - 12.03.08 · Quality of life, function and other aspects of survivorship post treatment Intermediate and long-term toxicity and other late

NBOCC National Data Strategy for Breast and Ovarian Cancer 1

National Data Strategy for Breast and Ovarian Cancer

Strategy Document

February 2008


TABLE OF CONTENTS

1. BACKGROUND 3

1.1 Data requirements 4

1.2 Existing data 5

1.3 Data gaps and inconsistencies 10

2. REQUIRED DATA INITIATIVES 13

3. STRATEGIC DIRECTIONS 15

3.1 Data Availability.................................................................................15

3.2 Data Reporting..................................................................................17

3.3 Quality and Consistency....................................................................17

3.4 Research in Data Collection and Use...............................................18


1. BACKGROUND

NATIONAL BREAST CANCER CENTRE

The National Breast Cancer Centre (NBCC)* was established in 1995 to improve breast

cancer outcomes primarily through translation of research evidence into policy and

practice. Its role was extended in 2001 to encompass ovarian cancer. The National

Breast and Ovarian Cancer Centre (NBOCC) is informed by: a Clinical Expert Advisory

Panel; international advisors; and other advisory groups and project teams, all including

broad consumer and professional involvement.

The NBOCC supports breast and ovarian cancer control by:

� Being a clearing house for information

� Providing distilled scientific information to researchers, governments, policy

makers, service providers and the public

� Working with stakeholders to develop guidelines for cancer diagnosis and

management, and promoting guideline implementation

� Developing educational strategies and programs for service providers, women

affected by cancer, and the public

� Supporting the development, implementation and evaluation of new models of

service

� Working collaboratively with other organisations and stakeholders in prevention,

early detection and treatment initiatives, in order to advance outcomes

� Developing and maintaining national monitoring of incidence, mortality rates and

survival outcomes for these cancers.

The NBOCC bases its work on the best available evidence from the scientific literature,

data on breast and ovarian cancer in Australia, and experiences of providers, patients

and carers. The NBOCC promotes best care for people affected by cancer irrespective of

geographic location or cultural, ethnic or Indigenous background. This involves working

with other national bodies in recommending health-system change and collecting data to

evaluate effects on these recommendations on service delivery, cancer outcomes, and

patient wellbeing.

*In February 2008, National Breast Cancer Centre (NBCC) changed its name to National Breast and Ovarian Cancer

Centre (NBOCC).


The NBOCC recognises that evaluation requires better data collection. Further, advisory

groups have underlined the need for greater access to data to improve health

surveillance, research, service delivery, and support for patients and carers. Better data

is sought for monitoring:

� Quality of life, function and other aspects of survivorship post treatment

� Intermediate and long-term toxicity and other late effects of care

� Consumer views on service needs, access and satisfaction with services.

A key direction of the NBOCC is to increase the range, consistency, quality and

timeliness of data for breast and ovarian cancer control. This involves working with

Cancer Australia, the Australasian Association of Cancer Registries (AACR), professional

colleges, cancer organisations, jurisdictions and services. Through collaboration with the

Australian Institute of Health and Welfare (AIHW), BreastScreen Australia, the Royal

Australasian College of Surgeons (RACS), and other stakeholders, the NBOCC regularly

monitors and reports national data that show program impacts and indicate areas in need

of greater attention.

This report has been informed by the Cancer Australia’s National Cancer Data Strategy.

The purpose is to build on the Cancer Australia strategy by adding further detail in

relation to breast and ovarian cancer.

1.1 DATA REQUIREMENTS

Health administrators, service providers, and community members require information

from the scientific literature on opportunities for breast and ovarian cancer control.

Biomedical researchers need updated information on cancer biology. Service planners

need data on how breast and ovarian cancers and their risk factors affect different

sectors of the population, the gaps in service, and the impact of policy initiatives on

outcomes.

Data requirements frequently cited by cancer advisory groups, including advisors to the

NBOCC, which are relevant to breast and ovarian cancer control, apply to:

� Socio-economic, ethnic and geographic determinants of these cancers

� Prevalence of person-centred risk factors. For example reproductive factors,

hormone replacement therapy (HRT) use, high alcohol intake, poor diet, lack of

exercise, excess body weight, non-participation in screening, and genetic

susceptibility

� Genetic and molecular cancer determinants


� Incidence, mortality, stage at diagnosis, survival, prevalence (including

prevalence of metastatic disease), and survivorship

� Projected service requirements; service availability and access; service

participation; and disparities in participation across population groups

� Service activity and cost

� Service quality. For example as indicated by service structures, processes,

transition times between services, clinical trial participation, patterns of care,

clinical outcomes, use of multidisciplinary care, provision of palliative care,

referral for psychosocial and other support, and extent of care coordination and

integration

� Resource availability and projected availability. For example as related to

workforce, facilities, equipment and funding

� Consumer views of service needs and satisfaction with services.

1.2 EXISTING DATA

Population-based cancer registries

Australia’s population-based registries include common data items for breast and ovarian

cancer, plus variable data on tumour size. National co-ordination occurs through the

AIHW and AACR.

Principal roles of these registries are broad population health surveillance and research.

Each state and territory has a registry. While registry designs and content are similar,

they have been influenced by variations in state/territory legislation, administrative

environments, and other historic factors.

Population-based registries are used for:

� Broad population surveillance of cancer incidence, mortality, prevalence, and

survival by socio-demographic descriptors. For example, age, country of birth,

geographic location, socio-economic status, service access, and diagnostic

period

� Investigation of real and perceived cancer clusters, and frequently, associated

environmental concerns

� Quality assurance. For example, providing interval cancer data to screening

programs

� Broad service planning. For example, projecting infrastructure needs


� Selecting representative samples of cancer cases for research. For example, for

patterns of care surveys and aetiological, clinical, psychosocial, health-system

and consumer research.

While differences exist between jurisdictions in registry methodology, and data definitions

and currency, they are ameliorated by a nationally recommended minimum data set

(MDS) and data definitions. Most core items are sufficiently comparable across registries

for national compilation and analysis, which is undertaken through the AIHW National

Cancer Statistics Clearing House. By comparison, definitional differences remain at a

detailed level for non-core items. For example, breast-cancer diameter, nodal spread,

and measures for multiple primary and multifocal disease.

Poor recording of Indigenous status is a universal deficiency in cancer registries, as it is

for other heath statistics collections, which seriously limits capacity for health monitoring

in this disadvantaged population.

While coverage and timeliness of Australian population-based registry data compare

favourably with overseas experience, there are differences by jurisdiction that limit data

availability nationally.

Opportunities exist to increase the data quality, potentially by updating the MDS and

gaining agreement on more consistent data collection and definitions. This was

underscored at a “Measuring Cancer” workshop conducted by the NBCC in late 2006

and in a joint NBCC/AACR workshop on breast data in mid 2007.

The range of data collected by population-based registries is adequate for broad public

health surveillance, but too narrow for more specific clinical and other service

applications. In particular, these registries rarely collect data on:

� Cancer stage at diagnosis (stage is important for assessing survival and

appropriateness of treatment/degree of spread and selected staging items are

collected by some registries, but not TNM† or related staging, as used in clinical

practice)

� Co-morbidity (this is relevant for treatment planning and assessing prognosis)

� Initial and post-recurrence treatment (uptake of treatment guidelines cannot be

evaluated without this information)

� Recurrences (disease-free survival cannot be assessed)

†

T= primary tumour, N= regional lymph nodes, M= distant metastasis. Sobin LH, Wittekind C. TNM Classification of

Malignant Tumours. 6th ed. Hoboken, New Jersey: John Wiley & Sons; 2002


� Survivorship (quality of life, function and re-integration with life cannot be

monitored)

� Late effects (post-marketing toxicity and late effects cannot be assessed).

As stand-alone facilities, population-based registries have a limited application beyond

their principal public health surveillance and research roles, but they do have a central

contribution to make in the development of data networks that serve broader clinical and

health-service requirements.

Clinical cancer registration

Clinical registries that link with population registries provide the complementary staging,

treatment and allied clinical data required for monitoring clinical practice and outcomes.

Clinical registries are used to assess:

� Patterns of care in relation to guideline recommendations, to find opportunities to

improve care

� Economic characteristics of alternative treatment pathways

� Survival effects of different diagnostic and treatment practices

� Patterns of care and survivals for high-risk groups, to address inequalities

� Intermediate and long term toxicity effects of different chemotherapy and

radiotherapy protocols, to find means of protecting safety

� Operational characteristics of the health system, including patient flows between

the public and private sectors, to find opportunities for system improvement.

There is a strong interest in clinical cancer registration for collecting stage, treatment and

other clinical data. While major developments in clinical registration are occurring in New

South Wales, Queensland and Victoria, staging and related treatment data would only be

available for a minority of cancers across Australia at this time.

As for population-based registries, clinical registries are a jurisdictional responsibility.

Unlike population-based cancer registries, clinical registries are not coordinated

nationally (i.e., not through the AIHW, AACR or another body). Registry models vary. For

example:

� Western Australia and South Australia have hospital-based registries,

administered by teaching hospitals and linkable to the State population-based

registries. The South Australia registries were introduced in the 1980s and the

Western Australia registries in the 1990s


� New South Wales has a pilot program involving five Area Health Service

registries. Emphasis is placed on electronic data extraction from existing inpatient

and other administrative databases

� Queensland has introduced a web-based public-sector system, accessible across

the public sector and linkable to the State population-based registry. There is also

a separate lung cancer registry for the public sector

� Victoria has legislative provision for the central collection of MDS clinical items in

its population-based registry and is developing electronic means of receiving

these data

� There has been less emphasis on clinical cancer registration in Tasmania, the

Northern Territory, and the Australian Capital Territory.

There is a national MDS for generic clinical cancer registration, developed under the

aegis of the National Cancer Control Initiative (NCCI) and released in 2004, with data

definitions. The objective was collection of enough data to be informative, without

imposing an unsustainable data collection burden.

With discontinuance of the NCCI, Cancer Australia has assumed stewardship of the

MDS. It is important that the MDS remain current, credible and living document.

Bio-specimen databases

Most cancer registries have undertaken ad hoc linkages with bio-specimen data to

support research studies. There are fewer examples, however, of linked bio-

specimen/cancer registry platforms for use by external researchers in approved studies.

Existing and developing ones include:

� The Research Tissue Network in Western Australia – The network includes data

on cancers with stored tissue and/or blood. Administrative and ethics approval

has been given to link the bio-specimen data to the Western Australia cancer

registries in the public sector

� The Molecular Medicine Informatics Model (MMIM) in Victoria - Genetic,

biomarker, proteomic, imaging, co-morbidity, environmental, screening and other

data can be linked to cancer registries, Australian Bureau of Statistics (ABS)

statistics, official death registrations, and ideally Medicare records

� The 45 & Up Study in New South Wales – Data from questionnaire surveys, bio-

specimens, and other sources for a large cohort of residents aged 45 years and

older will be linkable to the New South Wales cancer registry data.


Other databases

Other data commonly used in cancer research and service delivery include:

� National Health Survey data (ABS): Sample surveys are used to collect self-

reported data on health conditions, use of health services, and health-risk

behaviours

� Cancer screening data (AIHW): The data are obtained from jurisdictionally based

breast and cervical screening programs, and more recently on colorectal

screening from Medicare and other sources. They enable monitoring of screening

coverage and performance, although deficiencies exist. For example, although

BreastScreen collects data on Indigenous status, other ethnicity markers, and a

range of risk factors, these data are not available from cervical screening

databases, due to their absence on the cytology and histopathology forms used

as data sources

� Demographic data (ABS): These are essential denominator data for calculating

cancer rates. The ABS Act prevents linkage of census data with external files at a

unit record level, which limits research opportunities. Ecological studies have

been limited by the absence of a consistent small-area locator, although “mesh

blocks” based on approximately 50 households are being introduced to address

this problem

� Mortality data (AIHW): These data are available for the period since 1968 through

“GRIM” books, which allow menu-driven assessments of cancer mortality trends

by age, sex, and jurisdiction. A similar facility has been introduced recently for

incidence data from 1982

� Hospital inpatient morbidity data (AIHW): These are activity-centred as opposed

to person-centred, covering public and private hospital inpatients since 1994-95.

Because most cancer surgery would be undertaken on inpatients, data linkage to

cancer registries would enable monitoring of surgical activity. This would not

apply to radiation and medical oncology services, which generally involve

ambulatory care

� Medicare data (Medicare Benefits Schedule (MBS)/ Pharmaceutical Benefits

Scheme (PBS)): PBS data have been available to the AIHW from 2004, although

only Western Australia has MBS/PBS data linkable at a unit-record level to

cancer registry and other disease databases.


1.3 DATA GAPS AND INCONSISTENCIES

Clinical cancer registration covers only a small fraction of cancers in Australia. As a

result, there are limited person-centred data available that cover:

� Cancer stage, co-morbid conditions and other prognostic indicators

� Treatment, especially private treatment, and immediate treatment outcomes

� Rates of participation in clinical trials

� Exposure to multidisciplinary care

� Referral for psychosocial support

� Recurrences and post-recurrent treatment

� Provision of specialist palliative care

� Outcomes (other than survival).

Staging data is important to evaluate early detection initiatives. These data also facilitate

attribution of increases in measured survival between earlier detection and treatment.

Treatment and treatment-outcome data are necessary to assess the impact of treatment

guidelines on practice and outcomes, and to assess the cost-effectiveness of alternative

treatment pathways. Treatment data should be linked to data on hospital-based and

other morbidity databases to assess intermediate and long-term toxic effects of new

treatments.

While surveys of patterns of care have been undertaken to address gaps in staging and

treatment data (including a national survey of patterns of breast cancer care in 1995),

these surveys provide only a ‘snap shot’, and due to sample-size limitations, cannot be

used to monitor services at a local level. Also, they impose a considerable data-collection

burden on service providers.

The MDS for clinical registration was intended for generic service monitoring and does

not address the more detailed data needs of specialists for service audit and clinical

research. Without guidelines, specialist groups are deciding on their own items in a more

independent manner. Examples include the RACS National Breast Cancer Audit dataset,

and in New South Wales, extended MDS items (i.e., items additional to the generic MDS)

for gynaecological oncology.

The NBOCC is working with RACS to produce reports for population health monitoring of

breast cancer and its management, and to investigate other issues of clinical importance.

The NBOCC has also developed a specialist breast cancer MDS, with data definitions, to

complement generic clinical cancer registration. This is being field tested in two New


South Wales locations. The aim is to produce a national guideline to increase national

comparability of data.

A MDS for specialist registration is also needed for ovarian cancer and is under

development in 2007-2008. This project has been extended to cover specialist

registration of other gynaecological cancers, in collaboration with Cancer Australia. MDS

initiatives of this type are important to avoid the independent development around

Australia of disparate specialist datasets, which would limit opportunities for collective

use for external benchmarking, service monitoring and research.

Where clinical registries exist, survival outcomes are tracked through linkage with

population-based registries and the National Death Index at the AIHW. Additional data

linkage is also pursued to fill data gaps, although often on an ad hoc basis and with

mixed success. An exception is the Western Australia Linkage System that enables

linkage of cancer registry data with the range of clinical and socio-demographic data

required for effective service monitoring and quality assurance. Similar linkage is being

pursued in New South Wales, Queensland and Victoria.

Clinical cancer registries have been used for many decades in the United States of

America and elsewhere. They are a proven means of capturing the staging and other

prognostic data needed to complement population registry data. Demonstration models

have existed on a limited scale in Australia for up to 20 years. By producing linked

datasets from these registries, population registries and other data sources, case

survivals have been monitored by stage and other prognostic indicators to assess service

quality. There are many examples of these applications described in government reports

and the scientific literature.

The collection of treatment data is more problematical in contemporary treatment

settings. Cancer patients are frequently treated through both the public and private

sectors, such that patterns of care cannot be assessed with data from one sector alone.

Clinical registries, which are mostly in the public sector, can have only a limited role in

treatment monitoring unless they are able to incorporate data from the private sector.

Through a memorandum of understanding, Medicare data are available to the Western

Australia Linkage System. Similar linkage capabilities are being pursued in other

jurisdictions, although not yet routinely involving Medicare data. Data linkage with

Medicare has been sought to plug gaps in the production of de-identified files, such that

they would include:

� Cancer types, dates of diagnosis and death, and causes of death (from

population registries)

� Staging, other prognostic data, and public-sector treatment data (from clinical

registration)


� Private treatment data, including radiation oncology and medical oncology data

(from Medicare records).

Data need to be linked across the public and private sectors, and across administrative

jurisdictions, for effective service monitoring. This raises significant legal, ethical and

administrative issues that need a national solution, guided by experience with the

Western Australia Linkage System, Commonwealth Scientific and Industrial Research

Organisation (CSIRO) linkage methodologies, and linkage models in other countries. For

example the United Kingdom and North America.

A solution would require careful system design for developing de-identified datasets that

are used at a sufficient level of aggregation to render inference of a person’s identity

impossible. Such approaches have been used in the Western Australia Linkage System,

by the CSIRO in Queensland, the MMIM model in Victoria, and in various other projects.

A carefully planned national protocol is needed to optimise the significant public benefit to

be gained from data linkage, while optimising privacy.

Breast and ovarian cancer registration is heavily reliant on histopathology reporting.

Variable content of laboratory reporting undermines consistent cancer registration. The

move to structured (‘synoptic‘) reporting should assist cancer registration by encouraging

more consistent and accessible laboratory data.

Indigenous Australians have particularly adverse cancer outcomes. This also applies to

breast cancer specifically. Indigenous identification has been poor in health records

generally, and in cancer registries, and requires upgrading if cancer trends and outcomes

are to be monitored and addressed effectively.

Population and patient/carer surveys have been useful means of data collection on risk

behaviours; community views on service needs, availability, and access, and satisfaction

with services; and survivorship and the availability of community support services. These

surveys have been sporadic, ad hoc, and not coordinated so as to address data

requirements systematically. Meanwhile, data on workforce and other infrastructure exist,

but there are significant gaps that limit usefulness for monitoring and planning.

There is much data collection in Australia, but it tends to occur in ‘silos’ and is health-

activity related as opposed to person related. Without linking data from multiple

databases at the person level, the collective value of these data cannot be realised.


2. REQUIRED DATA INITIATIVES

Data consistency

� Minimum data sets are needed, and require ongoing maintenance, both for

generic and specialist breast and ovarian cancer registration. These data sets

and their data dictionary definitions should be consistent with ACN pathology

reporting guidelines and recommended structured reporting

� Resources should be directed to the development, dissemination and revision of

cancer information standards, so as to achieve more consistent and relevant data

provision. NBOCC has a co-ordination role to play in this regard.

Broadening the scope of data collection

� Breast and ovarian cancer registration should be broadened to cover stage and

other clinical characteristics included in nationally agreed minimum data sets

� Strategies should be developed to gain access to MBS and PBS data for

combination with cancer registry data, such that privately funded medical and

radiation oncology services can be monitored. The objective should be the

production of de-identified datasets that are patient-centred rather than activity-

centred

� The value of linking datasets, rather than repeat data collection at source, should

be considered when planning breast and ovarian cancer projects. The NBOCC

should work with other agencies and national stakeholders in advocating the

development of effective pathways for data linkage

� The application of the privacy requirements is a major roadblock to effective use

of existing data. The NBOCC should join with other agencies in advocating for

access to, and integration of public and private data for cancer research. This is

important as health consumers are increasingly using a combination of public and

private services for cancer care.

Role of the NBOCC

The NBOCC should:

� Work with relevant national bodies in the development of national data standards

for breast, ovarian and other gynaecological cancers; and in advocating priorities

of projects involving data linkage, coordination and review


� Have a strategic and coordinative role in relation to breast and ovarian cancer

data and foster innovation.

� Provide education concerning the resource needed by cancer registries to meet

growing needs and expectations

� Foster the further development of clinical and broader health-service

performance indicators for breast and ovarian cancers

� Develop a framework for bio-specimen banking that would optimise the national

value of bio-specimen databases for breast and ovarian cancer research.

Other issues

� The NBOCC has worked closely with professional and consumer groups in the

development of best practice clinical guidelines and performance indicators.

Similar work is needed at a health system level

� Clinical cancer registration has focused on the primary treatment round, with little

emphasis on metastatic disease, its treatment and treatment outcomes, and

associated survivorship issues. These aspects warrant increased focus,

particularly in relation to breast cancer where post-metastatic survival has

lengthened significantly.


3. STRATEGIC DIRECTIONS

Data on the population-wide impact of breast and ovarian cancer are fundamental if the

NBOCC is to target its initiatives effectively to reduce the burden of these cancers and

disparities in outcomes across the community.

There is a need to define key cancer-control questions, the data available to address

them, how to access these data, the data gaps that exist, priorities for filling these gaps,

the steps needed to improve data quality and consistency, and the research required into

different data-collection models and technologies to optimise data availability. The

NBOCC needs to ensure that the national health-data collection and reporting effort

appropriately addresses breast and ovarian cancers.

The National Breast and Ovarian Cancer Data Strategy should address these needs in a

prioritised manner. The Strategy should reflect broad consultation with other partner

organisations and stakeholders. The NBOCC should work with these bodies in a planned

and coordinated manner to ensure that data needs are addressed.

In particular, the NBOCC should collaborate with other stakeholders in undertaking the

following:

3.1 DATA AVAILABILITY

Assessing and prioritising data needs for breast and ovarian cancer control

This should cover data needs for:

� Public health surveillance, including surveillance of Indigenous and other groups

at special risk

� Health policy development and administration

� Service delivery (including delivering preventive, early detection, treatment,

palliative and supportive care, and terminal care services)

� Research.

Mapping data availability in relation to these needs, identifying and

prioritising gaps, and collaborating with data-collection agencies in

closing gaps


This should cover data needs for assessing:

� Treatment in relation to best-practice guidelines

� Survivals and other treatment outcomes by stage

� Intermediate and long term toxicity and other late effects of new treatments

� Performance of new technologies, including imaging technologies, and molecular

and biochemical markers for screening and treatment

� Cost-effectiveness of alternative service models/interventions

� Disparities in service access and quality

� Disparities in cancer risk, prevalence, outcomes and survivorship

� Consumer satisfaction with service availability and provision.

Addressing deficiencies in Indigenous identification in cancer registries and allied databases

Cancer registries obtain these data from hospital-admission and death records.

The quality of Indigenous identifiers from these sources is poor and needs

upgrading if cancer and broader health-related needs of this sector of the

population are to be addressed effectively. Breast cancers are diagnosed later in

Indigenous than other Australian women, with lower than expected stage-specific

survivals. This is a high-risk group that warrants special attention.

Maximising data use

Maps of data resources and contact people should be disseminated to potential

data users to optimise the use of evidence for breast and ovarian cancer control.

Opportunities to bring data together from separate databases through NCRIS and

other initiatives should be pursued to optimise their collective value and use.

Removing excessive barriers to data use

This should address legislative barriers and requirements for researchers to gain

approval from excessive numbers of ethics committees. The NBOCC should

develop a position paper on data access, the integration of public and private data

for research, and consistency of data access across institutions.


Promoting awareness among funding bodies of data applications in

cancer control

The NBOCC should provide information on breast and ovarian cancer data

requirements, such that data-collection funding bodies can factor this information

into their funding decisions. There has been a major increase in demand for data

for evidence-based practice, which cannot be met with existing resources.

3.2 DATA REPORTING

Promoting the production of data reports that address key breast and

ovarian cancer questions

There should be ongoing consultation and review of key cancer-control questions

to guide data analysis and reporting. Report production could be collaborative

ventures between data-collecting bodies and data users.

3.3 DATA QUALITY AND CONSISTENCY

Advising on revisions of the MDS developed under the aegis of the NCCI

for generic clinical registration, as related to breast and ovarian

cancers

The currency of the MDS should be maintained. Revisions need guidance from

clinical authorities. This process should be undertaken in collaboration with the

Cancer Australia, who now carries stewardship of the MDS, the AIHW, the

Statistical Information Management Committee, and related standards-setting

bodies.

Promoting the development of MDS modules for specialist breast and

ovarian cancer clinical registration

The NBOCC should work with professional bodies, researchers, consumers, the

AIHW, the Statistical Information Management Committee, and related standards-

setting bodies in developing and maintaining currency of MDS modules. A breast-

cancer module is presently being pilot tested. Work is now needed to develop an

ovarian cancer MDS.


Meeting with administrators and users of major bio-specimen

repositories to determine associated data requirements, consistency

and quality issues

Tissue banks have a central role to play in molecular research for breast and

ovarian cancer control. There is a need to optimise their development and

availability for research. Bio-specimen databases should be developed that can be

inter-linked and linked with clinical and population health databases for research

translation. The NBOCC should work collaboratively to determine data

requirements and guidelines to enhance bio-specimen data quality and

consistency.

3.4 RESEARCH IN DATA COLLECTION AND USE

Promoting innovation in data collection

Traditional methods of clinical cancer registration are likely to be too labour-

intensive for sustainability in contemporary health-service environments in which

patients obtain treatment through multiple public and private service outlets. The

NBOCC should work collaboratively in supporting experimentation with alternative

models, including models that extract data from existing databases. Opportunities

to improve data collection through structured (“synoptic”) reporting should be

pursued.

Promoting data collection on the prevalence of metastatic cancer

Cancer registries do not collect data on the prevalence of metastatic disease. With

increased survival of people with metastatic disease, for example, as for breast

cancer, the need to collect data on prevalence of metastatic disease and on

effectiveness of its treatment has increased. As an interim measure, statistical

modelling projects should be undertaken to estimate prevalence nationally and at a

regional level, as a guide for service planning.

Collaboration and dissemination of research and development results

Australia has a history of independent development of data systems at a

jurisdictional level, with sub-optimal inter-jurisdictional collaboration. A collaborative

framework is needed to promote the sharing of innovative technologies, e-health

strategies and models. Opportunities for mutual learning and collaboration should

be promoted by the NBOCC.

Documents

NSW-NBCC National Cancer Data Strategy - 12.03.08 · Quality of life, function and other aspects of survivorship post treatment Intermediate and long-term toxicity and other late