Participant Information Sheet/Consent Form

9. What will happen to information about me?

Confidentiality. Any information obtained in connection with this research project that can identify you will remain confidential. It will only be disclosed with your permission, except as required by law. All participants will be identified by a code number. Only the researchers involved in the study will have access to the information.

Disclosure of information to people outside the organisation. As outlined in the Daybreak Privacy Policy (https://hellosundaymorning.org/privacy-policy), we do not sell your information to third parties. To the extent practicable HSM will only disclose de-identified information about members outside its organisation on the following bases: 

a)to HSM’s accountants, funders, grant providers, financial advisors and legal advisors for the purposes of maintaining the provision of the Daybreak’s services and HSM’s business generally;

b)to HSM’s academic partners and/or academic publications for the purposes of publishing research regarding the usage and effectiveness of Daybreak in helping members change their relationship with alcohol;

c) to HSM’s service providers and contractors to help HSM provide, manage, administer, monitor, distribute, operate or facilitate Daybreak’s services; to develop, market or provide HSM’s products and services, and to enable HSM to provide and improve its services (for example, web hosting companies, website administrators, mobile app distribution platforms, support services companies, marketing campaign attribution services, data analytics and analysis companies, advertising partners and payment processing venders);

d)to law enforcement, government or regulatory bodies, lawful authorities, or other authorised third parties: in order to comply with laws, regulations, court orders, or other legal obligations, assist in an investigation, protect and defend our rights and property or the rights or safety of third parties, to enforce our terms of use, privacy policy, or agreements with third parties, or to assist with crime-prevention purposes; or

e)to any other third parties:

• if HSM considers it necessary to protect the rights or property of HSM or any other individual, or to lessen a serious threat to a person’s health or safety;
• if a member has given permission for us to do so;
• to obtain funding or prospective funding for HSM to perform its services;
• to configure the Daybreak’s services to meet members or a member’s wishes and needs;
• to generate anonymous statistical data;
• where there is a change of control in HSM’s business or a sale or transfer of HSM’s business assets, HSM reserves the right to transfer to the extent permissible at law, Daybreak, together with any Personal information (including Sensitive and Health Information) and de-identified information of MEMBERS, to a potential purchaser of HSM’s assets on the condition that they maintain the information confidentially and in accordance with this Privacy Policy.

Participants should note that, some data from your participation in this study will be sent overseas or shared with persons outside Australia. The regulatory regimes governing data access and use in other countries may not be the same as those that are in place in Australia. In the case of data that identifies you, or from which your identity may be ascertained, a person or organisation subject to Australian privacy laws that has collected your information must take reasonable steps to ensure that an overseas recipient handles the information in accordance with any relevant Australian privacy principle (unless an exemption applies). If you have any questions about this, direct them to the Principal Investigator.

 Security. Following Australian Health Data regulations and requirements of the overseeing ethics committee, all data will be securely held by Hello Sunday Morning for 15 years following completion of the study. Whilst we endeavour to ensure that personal information is secure, it is not possible to safeguard against all possible breaches of security. Participants are advised to ensure that the device from which they participate is secure and to log out of the device after they have finished a session on it. As outlined in the Daybreak Privacy Policy (https://hellosundaymorning.org/daybreak-privacy-policy), Daybreak security includes the encryption of all data during transmission using Transport Layer Security (TLS) encryption for all transmitted data between the client applications and the back-end services. All databases are set up with Amazon’s Key Management Service (KMS) for encryption of data at rest. All data are maintained on secure services for a period of time, as defined by relevant laws. Some data is stored and processed on servers located in Australia and some is stored and processed in the United States of America. Access to stored data is protected by multi-layer security controls including firewalls, role-based access controls and passwords.

Publications. In any publication, information will be provided on a group level such that no individual can be identified.

Accessing information about you. In accordance with relevant Australian privacy and other relevant laws, you have the right to access the information collected and stored by the researchers about you. Please email our privacy officer if you would like to access your information. For further information, please see our privacy policy (https://hellosundaymorning.org/privacy-policy)

 10        Who is organising and funding the research?

Funding. This research has been funded by the nib foundation (an Australian health care fund)

Co-ordination. It is being co-ordinated by Hello Sunday Morning in Sydney, Australia.

Commercialisation. Although not planned at this time, it is possible that in the future Hello Sunday Morning may seek to commercialise intellectual property arising from this research.  You will not benefit financially from your involvement in this research project even if, for example, knowledge acquired from your participation proved to be of commercial value. In addition, if knowledge acquired through this research leads to discoveries that are of commercial value to Hello Sunday Morning or the nib foundation, there will be no financial benefit to you or your family from these discoveries. No member of the research team will receive a personal financial benefit from your involvement in this research project (other than ordinary wages).

 11        Who has reviewed the research project?

All research in Australia involving humans is reviewed by an independent group of people called a Human Research Ethics Committee (HREC). The Bellberry HREC (https://bellberry.com.au/) has reviewed and approved this study in accordance with the National Statement on Ethical Conduct in Human Research (2007) – incorporating all updates. This Statement has been developed to protect the interests of people who agree to participate in human research studies. Should you wish to discuss the study or view a copy of the Complaint procedure with someone not directly involved, particularly in relation to matters concerning policies, information or complaints about the conduct of the study or your rights as a participant, you may contact the Operations Manager, Bellberry Limited on (08) 8361 3222.

12        Further information and who to contact

The person you may need to contact will depend on the nature of your query.  If you want any further information concerning this project or if you have any problems which may be related to your involvement in the project, you can contact the following people: