National Bowel Cancer Screening Program Register
Department of Human Services (formerly Medicare Australia) RoleDepartment of Human Services, which administers major government health programs such as Medicare, is working in partnership with the Department of Health and Ageing to implement the National Bowel Cancer Screening Program. To send invitations to participate in the National Bowel Cancer Screening Program, Department of Human Services will select invitees from either the Medicare enrolment records or the Department of Veterans' Affairs enrolment file as authorised by a service arrangement under subsection 7(2) of the Medicare Australia Act 1973.
Department of Human Services role in the Program is to assist in administration aspects including:
- maintenance of the National Bowel Cancer Screening Program Register (the Register); and
- collection of information about participation in the Program and test results.
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What does the Register do?The Register plays an important role in the Program. To assist participants through the screening pathway, the Register will:
- issue a pre-invitation letter followed by an invitation pack to people turning 50, 55, 60 or 65;
- issue reminder letters to people who have not taken up an invitation to participate within a specified time;
- record participants' details, including screening history, the results of the Faecal Occult Blood Test (FOBT), and the results of colonoscopy which follow as a result of a positive FOBT;
- provide confirmation of contact details to the pathology laboratory responsible for analysing FOBT kits;
- issue reminder letters or make telephone calls (where necessary) to participants with a positive FOBT result to urge them to see their doctor for follow up tests, for the purpose of diagnosis;
- issue follow up reminder letters or telephone calls (where necessary) to participants' nominated doctors;
- provide information on participants’ screening and detection history to nominated doctors, Program Coordinators and employees in the bowel cancer screening area of state/territory governments to assist with participants' medical care; and
- check Medicare claims data (prior to issuing a reminder) to determine if a claim for a bowel procedure has been submitted. If a claim has been made the Register will record the procedure and write to the medical service provider seeking the results of the procedure.
What information is kept on the Register?The Register keeps details such as name, contact details, age, gender, Medicare number, results of screening tests and the name of a nominated doctor. The results of any further tests undertaken, such as a colonoscopy or biopsy, are also recorded.
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What will this information be used for?Department of Human Services will use personal details to:
- invite eligible people to screen;
- remind eligible people to complete their FOBT;
- provide contact details to the pathology laboratory responsible for analysing FOBTs;
- check Medicare and DVA claims for bowel examinations if required and contact medical service providers to request relevant reports be submitted to the Register; and
- send reminder letters and/or make telephone calls (where necessary) to participants and their nominated doctor.
The disclosure of this information to AIHW and state/territory governments is authorised by a service arrangement under subsection 7(2) of the Medicare Australia Act 1973.
A person's name, contact and screening details may also be provided to:
- their nominated doctor;
- medical specialists whom they may be referred;
- Program Coordinators; and
- employees in the bowel cancer screening area of state/territory governments.
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Who will have access to information on the Register?Information held on the Register, and information provided to the Australian Institute of Health and Welfare (AIHW) by the Register, is protected by law and will not be released to any other person or organisation without prior consent from participants or unless required or authorised by law.
The information provided to the AIHW will include name, date of birth and postcode. This information will enable the AIHW to match this information with state/territory cancer registers for the monitoring and evaluation of the Program.
Personal details provided to the AIHW will be destroyed when the match is made, and information that is released from the AIHW will not contain any information that could identify an individual.
By completing and returning the Participant Details Form and/or the FOBT to the pathology laboratory, invitees are agreeing to become a participant in the Program and that:
- they have read, or had explained to them, the Information Booklet, the Privacy Note on the Participant Details Form and the FOBT instructions;
- the FOBT samples they provided will be tested for the presence of blood and they understand that:
- FOBTs are not always 100% accurate and therefore test results cannot be guaranteed (studies indicate that FOBTs detect 70-80% of cancers);
- the result of the FOBT will be sent by mail to the address they have provided;
- if they have nominated a doctor/medical practice, the result of the FOBT and their contact details will be sent to that address; and
- if blood is found in the sample provided it is their responsibility to make an appointment with a doctor to discuss the results, the nature and risks of any further tests and to arrange for further tests following a full clinical assessment. It is not the responsibility of the Program or its employees, agents or anyone connected with this test procedure to do this for them;
- their personal and clinical details will be collected and provided to the National Bowel Cancer Screening Program Register (the Register) by:
- the doctor/medical practice that they have nominated (if any);
- hospitals to which they may be referred;
- doctors and medical specialists to whom they may be referred;
- pathologists who are requested to analyse samples taken from any follow up procedures;
- Program Coordinators; and
- employees in the bowel cancer screening area of state and territory governments; and
- their personal and clinical details will be used and disclosed for the purposes outlined in the Privacy Note on the Participant Details Form and that they consent to those uses and disclosures.
What information do doctors and medical specialists provide to the Register?General practitioners and specialists will provide information to the Register (by completing data collection forms) about consultations/procedures with Program participants who received a positive FOBT result. Specifically, information will be provided on:
- Referral for colonoscopy;
- Not referred for colonoscopy;
- Colonoscopy results; and
- Histopathology results.
What if a person's details are incorrect or change?If personal details (such as address or telephone number or doctor) change or are listed incorrectly during the course of the Program please call the National Bowel Cancer Screening Program Information Line on 1800 118 868.
Page currency, Latest update: 04 February, 2013