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National Bowel Cancer Screening Program

PROJECT DETAILS  

Contact information

Name

National Bowel Cancer Screening Program

Acronym

NBCSP

Site link

http://www.cancerscreening.gov.au/internet/screening/publishing.nsf/Content/bowel-about

Registry head

Department of Health and Ageing

Contact person

Alan Keith

Director Bowel Screening

Registry location

Medicare Australia

Phone number

(02) 6289 3263

Mailing Address

Department of Health and Ageing

GPO Box 9848

CANBERRA, ACT, 2601

Email address

Cancerscreening@health.gov.au

 

GENERAL ASPECTS 

Date last updated

September 2010

Background information

The National Bowel Cancer Screening Program (NBCSP) Register records persons who have been invited to participate in the NBCSP, the results of their initial pathology test (positive of negative) and where they undergo further screening through health professionals associated with bowel cancer screening, the results of that screening.  The data base is used to generate correspondence, monitor progress through the screening process, provide reports to authorised recipients and monitor the performance of the NBCSP

Reference population

What is the common circumstance that determines inclusion in the registry

People who are within the eligible population will be invited to take part in the program. The eligible population is Australians turning 50 years of age between January 2008 and December 2010, and those turning 55 or 65 between July 2008 and December 2010, who hold a Medicare card or DVA gold card.

From 1 May 2006 to 30 June 2008 the eligible population was defined as those turning 55 or 65 years of age during the period 1 May 2006 to 30 June 2008.

Does the database trace individuals through more than one episode of care?

Database follows patient up over more than one episode of care.

What geographical area is covered by the registry

A national program in Australia only.

 

TIME PERIOD COVERED BY THE REGISTRY 

Date in which data was first collected

1 May 2006

End date (if project no longer collects data)

The Program lapses on 30 June 2010 unless Government commits to ongoing funding.

Does the registry collect continuous or periodic data?

We collect periodic data.

If the registry documents management of patients, for what periods of time are individuals followed up?

Participants who receive a positive test result are followed up with letters and phone calls for a period of up to 10 months from the date when they were sent initial results.  Participants remain on register unless they opt off.

What database/s, if any, are used to assist with follow up?

Medicare Australia database.

 

 

DATA SET

 

Content

 

Number of individuals/ episodes of care included in the registry

Number of Individuals: 1,483,768

Date in which this was determined

31 July 2010

Example of data collection questionnaire

Webpage for data collection tool - Data is collected using a variety of paper and electronic forms as well as direct electronic data inputs.  Forms available from the NBCSP website are:

  1. Assessment Form – completed by participant’s GP
  2. Colonoscopy Report – complete by participant’s colonoscopist.
  3. Histopathology Report – completed by histopathologist where colonoscopist has requested tests.
  4. Procedure Report – Used to identify any adverse event that occurred during the colonoscopy procedure. 

Note: A Participant Details Form is also completed by persons participating in the NBCSP but this form is sent to the person with the invitation to participate in the NBCSP and is not available on the Internet.

Data linkage

 

If nationally approved codes are used to identify the subject, clinician or institution, what is link key?

Yes these are:

  1. Medicare and/or DVA number
  2. Health Professionals Provider Number
  3. Hospital Provider Number
  4. Participant ID – An identifier unique to Medicare Australia

Note: It is also likely that NBCSP will use the eHealth Individual Health Identifier as well eHealth identifiers for providers and health organisations.

To which other database is linkage routinely undertaken

N/A

Security

 

Where are the electronic data held?

Computer networked to an internal network.

What happens to the paper forms?

Paper questionnaires or forms containing information on individuals are kept and stored.

Confidentiality

 

How are records stored on the database?

Identifiable:

Have subjects given consent for data collection?

Signed consent obtained only on first contact with service.

What is the level to which subjects have consented?

Subjects informed individually of data collection and use to which data will be put.

 

OUTPUTS

Analysis

 

How frequently are data transferred from the health care providers to the central database?

Daily

Can ad hoc analyses be preformed for health care providers?

Locally: Yes

Centrally: No

Audit reports

 

How frequently are multi-centre audit reports produced?

Annually

How frequently are provider-specific audit reports produced?

No reports have been produced.

Publications

http://www.aihw.gov.au/cancer/publications.cfm

NBCSP data was directly used in the calculation of the COAG reporting indicators for bowel screening (available at http://www.coag.gov.au/crc/reports.cfm). This includes a Data Quality Statement which covers the quality of the data for producing the indicator. The indicator relating to bowel screening is PI 12. Section 4 of the main report deals specifically with bowel cancer and screening (Incidence of Bowel cancer p 72 and screening rates for bowel cancer p87). The data behind the bowel screening commentary is available in Volume 2 Section 2 pp248-249.

 

MANAGEMENT 

 

Is the registry approved by any clinical/professional association?

Royal Australian College of General Practitioners, Australian College of Rural and Remote Medicine, Royal College of Pathologists of Australasia, Gastroenterological Society of Australia.

Who is involved in the management database?

Doctors - Doctors provide input to the database in the form of test results however they have no input into the management of the database.

Others (please note): Currently managed by Medicare Australia under a formal Service Arrangement with the Department of Health and Ageing.

Governance

 

Does a Steering Committee overseas the Registry?

No

Does a Management Committee overseas the day-to-day activities of the Registry?

No

Do terms of reference exist for the Steering Committee?

No

There is a clearly documented pathway for escalating issues identified by the registry?

No

How often does the Steering Committee meet?

N/A

How often does the Management Committee meet?

N/A

Rationale

The register operates under a Business Practice Arrangement which is between the Department of Health and Ageing and Medicare Australia.

Funding

 

What is the source of funding for the registry?

Public sector funding body (e.g. Dept of Human Services, Department of Health, university).

 

 

DATA QUALITY

 

Coverage

 

Extent to which the eligible population is representative of the country

Level 4: Total population of country included.

Who is represented in the registry?

Australia

Which group/s, if any, should be represented but is/are not?

Nil

Completeness of recruitment of eligible population

The proportion of the eligible population that the registry includes

Level 4: All or almost all (>97%)

How and when was completeness last determined?

Ongoing

Date in which last preformed

 

Variables

 

What variables are included in the registry

Identifier, Admin information, Condition, Intervention, Short term outcome.

Completeness of data

 

The percentage of variables at least 95% complete

Level 1: Unknown or few (<50%)

When was the completeness last determined?

This is an ongoing process as program forms and systems are continuously being improved.

Continuous data

 

The percentage of continuous variables collected as rave data 

Level 1: Unknown or few (<70%)

Use of explicit definitions for variables

The percentage of variables which have clear definitions laid out in a document such as a data manual

Level 4: All or almost all (>97%)

Use of explicit rules for deciding how variables are recorded

The percentage of variables which have clear rules on how to code them in the registry laid out in a document such as a data manual

Level 3: Most (50-97%)

Reliability of coding

How standardised is the coding for conditions and interventions? 

Level 4: Good. Good inter and intra-rater reliability (i.e. Kappa >0.8).

The method by which the reproducibility was tested

Reviewed internally in last 12 months.  Review is ongoing as the program is continuously being improved.

Date at which this was last performed?

ongoing

Independence of observations of primary outcomes

What outcome/s do/does the registries collect?

Primary outcome of interest collected by the registry  - Screening by use of a faecal occult blood test (FOBT) for the early diagnosis of bowel cancer leading to a reduction in mortality.

Other outcomes collected by the registry: Number and outcome of colonoscopies, Histopathology results received post-colonoscopy.

Is there any Bias associated with the outcome due to the way in which it was reported?

Outcome 1:   Screening by use of a faecal occult blood test (FOBT) for the early diagnosis of bowel cancer leading to a reduction in mortality - Level 4: Independent observer blinded to the intervention, or not necessary as objective outcome

Outcome 2:   Number and outcome of colonoscopies - Level 2: Observer neither independent nor blinded to the intervention.

Outcome 3:   (Histopathology results received post-colonoscopy.) - Level 4: Independent observer blinded to the intervention, or not necessary as objective outcome

Data Validation

What measures are taken to ensure that the data are valid

Level 3: Range and consistency checks.

The method by which the validity of the data was tested

Checks with other internal databases to ensure that data is correct.

Date this was determined

Ongoing

 

 

CLASSIFICATION

 

Classification of registry

Screening