You have the right to access any of your personal information held by the University as part of StepUp for Dementia Research. If you believe that information is inaccurate, not relevant to the purpose for which it was collected, not up-to-date, incomplete or misleading you have the right to apply to have it amended.
There are a number of ways that you can access and apply to amend your personal information held by the University.
StepUp for Dementia Research wants to make sure everyone has the best possible experience of using StepUp for Dementia Research. Complaints about our work, Complaints about our work, staff, correspondence and levels of service are taken seriously. If you would like to make a complaint, please direct your complaint as outlined below. StepUp for Dementia Research will work to resolve your complaint as quickly and effectively as possible, and to learn from it to improve the quality of our service.
For technical issues, StepUp for Dementia Research encourages you to contact us in the first instance. In many cases we will be able to resolve the complaint quickly. In some cases, we may need to work with other organisations (researchers or support collaborators) to resolve the issue. This will be done on a confidential basis.
We can be reached at 1800-STEP-123 or 1800-7837-123, email@example.com, or mail your complaint to: StepUp for Dementia Research, Rm234, RC Mills Building (A26), The University of Sydney, NSW 2006. Please do not attend in person.
We will ask for your name, contact information, a clear description of the complaint, and how you wish it to be resolved so that we may best serve you. You may choose to remain anonymous but this may limit the way we manage the complaint.
We will aim to respond within 10 working days.
If you are unhappy with the way you have been dealt with during a research study and wish to complain formally, you must do this by contacting the actual research study team or their organisation. Contact details for the research study team would have been provided by study and can also be obtained from StepUp for Dementia Research. Most universities, companies and research institutions have a complaints process that can be found on their website or by telephone.
Complaints are investigated and managed in accordance with the University of Sydney Resolution of Complaints Policy 2015.
Research involving humans in Australia is reviewed by an independent group of people called a Human Research Ethics Committee (HREC). The ethical aspects of this project have been approved by the HREC of the University of Sydney [project number 2018/680]. As part of this process, we have agreed to carry out the project according to the National Statement on Ethical Conduct in Human Research (2007). This statement has been developed to protect people who agree to take part in research studies.
If you are concerned about the way StepUp for Dementia Research is being conducted or you wish to make a complaint to someone independent from the study, please contact the university using the details outlined below. Please quote StepUp for Dementia Research’s project title “Connect Dementia Research-Australia (CDR-A): An Australia-wide dementia research participation and public engagement platform” and project number 2018/680.
The Manager, Ethics Administration, University of Sydney:
All users of the StepUp for Dementia Research web-based system are required to have a username and password.
This policy sets out standards which the StepUp for Dementia Research service employed in relation to the use and management of system passwords for the website only.
Your password remains valid indefinitely unless there is a probably security risk or evidence of compromise. This requirement is current best practice.
Ten unique new passwords must be associated with a user account before an old password can be reused.
Accounts will be locked for a period of 30 minutes after 10 failed authentication attempts.
StepUp for Dementia Research passwords must meet complexity requirements defined below. These requirements determine what StepUp for Dementia Research considers important for a strong password.
Please avoid using
All reasonable precautions should be exercised to maintain the secrecy of your password and to ensure they cannot be easily guessed or derived by others. Passwords should not be disclosed to anyone, and you are not permitted to attempt to discover someone else’s password.
If you suspect or know someone has learned your password, use the online ‘reset password’ option or contact the helpline.
If you forget your password, reset it using the ‘forgotten password’ link or by calling the helpline for assistance.
Passwords can only be changed once every 24 hours.
If you choose to leave StepUp for Dementia Research, your online account will be deactivated. When your volunteer account is deactivated from the StepUp for Dementia Research website, all personal data will be removed from the database, however, for audit and monitoring purposes, a non-identifiable copy will be held in the University’ TRIM system or a similar system for the prescribed retention period. Data from deceased accounts and inactive accounts for three years will be treated similarly. For more information, refer to the University of Sydney’s Recordkeeping Policy 2017. This means that no registered clinician or researcher user accessing StepUp for Dementia Research can see your information. You will no longer be able to access your account and will not be contacted or matched to research studies. Withdrawing from StepUp for Dementia Research will not affect any existing research studies you have chosen to join.
N.B. To help us understand who is using StepUp for Dementia Research we will retain and use non-identifiable data, such as your gender and age, for analysis purposes.
If you registered by paper, the original paper form is securely stored and then, at the appropriate time, disposed of according to the University Recordkeeping Policy. Any electronic scans or copies of application forms are also stored and destroyed in accordance with University policy.