By signing the declaration at the bottom of the Statement of Choices, you agree to the document being shared with others involved in providing care for the person named on the document as per the privacy policy.

By signing the declaration you also agree that the information written on the Statement of Choices can be used for quality improvement/research purposes. This sort of research helps Queensland Health to build better health services tailored to the recognised needs of Queenslanders.

This information explains what particular information from the Statement of Choices may be used for quality improvement/research, how it is used, the process involved and how the privacy and confidentiality of the person mentioned in the Statement of Choices are protected.

Please take the time to read this information carefully and ask questions about anything you do not understand or want to know more about. You may call the Statewide Office of Advance Care Planning on 1300 007 227 during office hours for assistance.

What information is used?

Information collected relates to the person for whom the Statement of Choices was completed. Identifying information, such as names and dates of birth, is not shared with others.

The information which may be used for quality improvement research includes the:

• Type of form completed, A or B
• Postcode on the form
• Year of birth of the person
• Gender of the person
• Life prolonging treatments chosen by the person
• Other medical treatments chosen by the person
• The person’s outlined values
• The person’s preferred place of death

Information that will not be used for research purposes includes the person’s:

• name
• address
• phone number
• Medicare number
• day and month of birth
• names and contact numbers of substitute decision makers and GPs.

This means the information that is used is non-identifiable. It would be extremely difficult for anyone to work out who the information relates to.

How will the information be used?

The information that is used from the Statement of Choices (outlined above) will be combined with that from all other signed Statement of Choices to provide information on what future health care is requested by Queenslanders. This may guide future decisions and policies about health care in Queensland and may result in funding being provided to meet the needs of Queenslanders in the future.

What is the process involved?

Your consent to share the information on the Statement of choices is voluntary. If you do not wish the information to be collected for research purposes, please draw a line through the words “non-identifiable information being used for quality improvement/research purposes as per the information sheet” in the declaration section of the Statement of Choices.

Whether you agree for the information to be used or not, you will continue to receive the best possible service from Queensland Health hospitals and your primary healthcare providers.

There are no costs associated with consenting to share the information, nor will you be paid.

You will not be contacted at any stage for research purposes.

The information is collected by staff from the Statewide Office of Advance Care Planning and entered onto a data sheet, securely stored on Queensland Health password protected computer files.

Queensland Health may collect, use or disclose information found on Form B of the Statement of Choices and will only do so in accordance with the National Privacy Principles (NPP) set out in schedule 4 of the Information Privacy Act 2009 (Qld). More information about NPP is available at: NPPs in brief (QHEPS intranet).

Analysed information may be provided to Queensland Health managers, to Hospital and Health Services and local Queensland Health services. It may be published in journal articles and may be presented at conferences. No one will be able to work out who you are based on the information in the spreadsheet, reports or publications.

How is the privacy and confidentiality of the person mentioned in the Statement of Choices protected?

Privacy and confidentiality are ensured by making sure no identifiable personal information is shared for research purposes.

For this reason there may be no clear research benefit to the person by allowing the information on the Statement of Choices to be used for quality improvement/research purposes. By consenting to allowing the information to be used, however, it is likely to benefit others by helping Queensland Health to deliver more person-centred and relevant health care services in the future.

The non-identified information will only be used by Queensland Health staff who have sought and obtained ethics approval. All research in Australia involving people is reviewed by an independent group called a Human Research Ethics Committee (HREC). Any research from the information will have to have ethical approval before the research can go ahead.

All research is carried out according to the National Statement on Ethical Conduct in Human Research (2007). This statement has been developed to protect the interests of people who agree to have their information used in research studies.

Further information and who to contact

For matters relevant to this information please contact:

• Professor Elizabeth Reymond
  Deputy Director, Metro South Palliative Care Service, Metro South Health
  Phone 07 3156 9734, fax 1300 008 227 or email acp@health.qld.gov.au

If you have any concerns about how the information is being used then you may contact the Statewide Office of Advance Care Planning who will put you in touch with the HREC who reviewed the research submission. In most cases, the research will be reviewed and approved by:

• Metro South Human Research Ethics Committee
  Phone 07 3443 8049 or email Ethicsresearch.PAH@health.qld.gov.au

For information regarding access to data for research purposes, please refer to the Data Access Request Guidelines (PDF, 527.56 KB). These guidelines must be read prior to completing the accompanying Data Access Request Form.