Privacy, confidentiality and research
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
- that the information written on the Statement of Choices can be used for quality improvement/research purposes (End-of-life preferences database). In accordance with National Privacy Principals (NPP) – information written on Advance Health Directives is also used for quality improvement/research purposes.
- to the use of de-identified data in this way to help Queensland Health build better health services tailored to the recognised needs of Queenslanders.
The following information explains what particular information from the Statement of Choices and Advance Health Directive 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 and Advance Health Directive are protected.
What information is used
Information collected relates to the person for whom the Statement of Choices or Advance Health Directive was completed and is kept in the End-of-life preferences database. Identifying information, such as names and dates of birth, is not shared with others.
In a Statement of Choices 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
In an Advance Health Directive, the information which may be used for quality improvement research includes the:
- Postcode on the form
- Year of birth of the person
- Gender of the person
- Whether the person outlined responses to the values-based questions
- The person’s directions about life sustaining treatments
- The person’s directions about other health care and blood transfusions
- Appointment of attorney for health matters
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.
How the information will be used
The information that is used from the Statement of Choices and Advance Health Directive (outlined above) will be combined with that from all other signed Statement of Choices and Advance Health Directives 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.
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.
If you do not wish non identifiable information in your Advance Health Directive to be collected, please send an email to acp@health.qld.gov.au.
Whether you agree for the information to be included in the End-of-life preferences database 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 data being collected in the End-of-life preferences database.
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 the End-of-life preferences database and securely stored on Queensland Health password protected digital 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 is available at: National Privacy Principles | Office of the Information Commissioner Queensland.
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 privacy and confidentiality is protected
Privacy and confidentiality are ensured by making sure no identifiable personal information is shared for research purposes.
For this reason, there is unlikely to be a direct benefit to the person by allowing the information on the Statement of Choices or Advance Health Directive to be included in the End-of-life preferences database. 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 de-identified information will only be used by researchers 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 research requests
For matters relevant to this information please contact:
Director, Statewide Office of Advance Care Planning
Brisbane South Palliative Care Collaborative, Metro South Health
Phone: (07) 3156 9737
Fax: 1300 008 227
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. If the concern relates to an approved research project, this office will put you in touch with the Human Research Ethics Committee (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
Email: MSH-Ethics@health.qld.gov.au
For information regarding access to data for research purposes, please refer to the Data Access Request Guidelines . These guidelines must be read prior to completing the accompanying Data Access Request Form.
Contact
The Statewide Office of Advance Care Planning is funded by the Queensland Department of Health and can provide assistance with advance care planning information and resources for consumers and health professionals.
If you have any questions or would like further information, please contact us:
Statewide Office of Advance Care Planning
PO Box 2274, Runcorn Qld 4113
Phone: 1300 007 227
Fax: 1300 008 227
Email: acp@health.qld.gov.au