Information for Participants


Why have I been included?

A person is eligible to take part in the VLCR if they are:

  • 18 years or older
  • Newly-diagnosed with a confirmed primary lung cancer
  • Receiving treatment or admitted to a VLCR participating hospital or health care institution

Potential participants are identified by Victorian hospitals that provide care for individuals who have lung cancer. Notification of a lung cancer diagnosis will be provided by Hospital Information Services when a medical record is coded by clinical coders. Clinical codes relating to lung cancer will be used to identify cases. Details of the patient’s name and address will be provided to the VLCR. Once identified as an eligible participant to the VLCR, an explanatory and letter of invitation will be sent on behalf of the participating hospital, inviting participation in the Registry.

Participation

Participation in this registry involves collection of relevant personal and medical information from medical records, by trained registry staff.

Provided patients do not opt out, their details are entered into the VLCR, which is housed within the School of Public Health and Preventive Medicine at Monash University. By not opting out of the Registry, lung cancer patients have provided consent for information to be made available to the Registry and for further clinical information to be collected.

The opt-out period is two weeks following receipt of the  invitation letter and explanatory statement. We will not contact patients beyond this regarding participation.

In the past we have called participants at at 6, 12 and 18 months after diagnosis, to check how they are feeling. We are not doing this now, although we may do so in the future.

What’s next?

Your information will be used by the VLCR to generate reports for hospitals that deliver your care. Your information may also be used in publications, presentations, and future research projects that request registry data.  The information will be reported in such a way that you cannot be identified.

Health professionals and researchers will use the information to ensure hospitals and other health care services are providing the most thorough and effective care for patients with lung cancer.

Opting out of the VLCR (FAQ)


This is an opt-out registry. This means that you need to tell us if you do not want to participate. If we do not hear from you, we may start collecting information about. This may happen any time after two weeks from the date on the invitation letter and explanatory statement are mailed to you.

 

The Explanatory Statement will include clear instructions to enable either the patient or their next of kin to ‘opt out’ the Registry without incurring any costs. The opt off system will be available to patients up to two weeks after recruitment (before their name appears on the Registry). An 1800 telephone number to the Department of Epidemiology and Preventive Medicine, Monash University (Registry Custodian) will be provided on all brochures. Patients or next of kin can elect to opt off at any stage. Should patients opt off the Registry more than two weeks after the initial contact with the recruiting hospital department, their details will removed from the Registry.

FREQUENTLY ASKED QUESTIONS (FAQ)


Why have I been included?

A participating hospital has identified you as having being diagnosed with lung cancer. If you are unsure of your diagnosis, please speak with your treating doctor.

What do I do if I have been invited, but do not want to take part?

If you do not want the registry to collect information from your medical record, please contact the registry, on 1800 998 722 (Toll Free) or med-vlcr@monash.edu

What do I do if I have been invited, and want to participate?

If you have received a Participant Invitation Letter and are happy for VLCR to collect your data and would like to participate, you are not required to do anything. You will automatically be recruited two weeks after the date your invitation letter was sent.

If you decide to take part, and later change your mind, you are free to withdraw from the registry at any stage. You can ask for your information to be deleted from the registry at any time.

What are the possible benefits of taking part?

There will be no direct benefit to you from participating in this registry. The process of improving health care systems by providing hospitals with their quality of care data, takes a long time. This work is expected to benefit people diagnosed with these cancers in the future.

Are there any additional costs or reimbursements involved in participating

There are not costs associated with participating in this research project, nor will you be paid.

How can I participate?

The VLCR is currently only collecting data on primary lung cancer at participating health services. If you have been diagnosed or treated for your cancer in one of these participating hospitals within the project time frame, and you are eligible to be in the registry, you will be sent an invitation by post.

At this stage, we can only enrol people in the registry who have received an invitation. However, the registry is currently expanding to include more Australian hospitals.

Do I have to take part?

Participation in any research project is voluntary. If you do not wish to take part, you do not have to. This is an opt-out registry, this means that if you do not want to participate, you need to tell us. If you decide to take part, and later change your mind, you are free to withdraw from the registry at any stage. You can ask for your information to be deleted from the registry at any time, by calling 1800 998 722 (Toll Free) or send an email to med-vlcr@monash.edu

Your decision whether to take part will not affect your relationship with your treating hospital/s or specialist/s.

What will happen to information about me?

Your information will be used by the registry team to generate reports for hospitals, publications, presentations, and future research projects that require registry data. The information will be reported in such a way that you cannot be identified.

Any future research projects wishing to access registry data require approval from the relevant ethics committee/s and the VLCR Steering Committee. Identifying information, such as your name and date of birth, will be included on the registry, but will only be disclosed with your permission, unless required by law.

What is the purpose of this registry?

The VLCR collects information about diagnosis, treatment and outcomes of individuals with lung cancer in Victoria. This information is used to measure the quality of care provided by hospitals and report on areas where improvements to healthcare lung patients receive could be improved.

What are the possible risks of taking part?

This registry does not involve any changes to the medical care you receive. You will continue to receive the standard medical care; we simply record what happens to you.

There is a risk that you may become upset or distressed when contacted by registry staff, or when completing one of the questionnaires. Remember at any time. You can choose not to complete the questionnaires or withdraw from the registry. If you are distressed you can contact Beyond Blue on 1300 224 636.

What does participation in this registry involve?

Participating in this registry has two parts:

1. Collection of information from medical records

Trained registry staff will collect information from your medical records. Only relevant personal and health information will be collected. This includes:

  • Your name, data of birth, address, phone number(s), email address, hospital record number(s), medicare number
  • Contact details for your next-of-kin
  • Test results related to your cancer
  • Details of your cancer treatment
  • Names of the hospital/s and doctors treat you

To make sure all the essential information has been collected, your medical records will be reviewed several times over the course of your care. This information will be recorded in a secure database.

2. Questionnaires

You may be invited to participate in questionnaires about your symptoms and overall quality of care, over the course of your care. Questionnaires may be completed online, by post or telephone.

You may still participate in this registry even if you do not wish to participate in these questionnaires. Please contact the registry if you do not wish to be contacted about these questionnaires.