INSIGHT Stage 2 Update

Responses to Personalised Results

INSIGHT Stage 2 Update

In our previous news article, we shared that Stage 1 of the INSIGHT project (the co‑design phase) had been successfully completed. We’re now pleased to update you on Stage 2, following the launch of the pilot personalised-results dashboard. This dashboard was offered to a randomised group of 450 ISLAND Project participants, selected from the 2000 who had expressed interest.
Participants represented a broad cross‑section of our ISLAND community, and included people with differing genetic, biological, and cognitive profiles. They were randomly assigned to one of three groups:
INSIGHT, who received the full personalised dashboard
General, who received access to generalised results
Control, who did not receive results during the study period
All participants completed baseline surveys about their dementia risk, mood, and quality of life. Those in the INSIGHT group were given the choice of which results they wished to receive - biological, cognitive, or genetic. The vast majority chose to access all available information, demonstrating strong motivation and curiosity about their health.

How Participants Felt About Receiving Their Results
INSIGHT participants generally responded very positively. Before receiving results, most participants reported little or no concern about receiving personalised health information. After viewing their results, an even greater share said they were happy with their decision.
A large majority shared their results with a healthcare professional, and many also discussed them with friends or family members. Most said they would recommend the experience to others, highlighting the value they saw in receiving these personalised insights.
While responses were overwhelmingly positive, a small number of participants did experience some anxiety after viewing their results. Identifying these emotional responses is an important part of our research, helping us better understand how to support people when sharing sensitive health information.

Changes in Dementia Risk Behaviours
Between the beginning and end of the study, participants in the INSIGHT group showed the greatest improvement in their Dementia Risk Profile (DRP). Many reduced behaviours linked with higher dementia risk and increased behaviours associated with better long‑term brain health. These findings suggest that receiving personalised results can empower people to make meaningful, health‑supporting changes.

Why This Matters
Your participation is helping us understand how personalised results shape people’s feelings, choices, and wellbeing. What we are learning is already informing how ISLAND shares information - ensuring that future communications are clearer, more supportive, and more empowering for participants across the program.
Thank you for being part of this important work. We look forward to sharing more updates as the INSIGHT project continues to grow and evolve. We are planning on a wider roll-out and will be in touch later in the year with more details.

Terms & Conditions

To participate in ISLAND Project you will be using the learning management system that hosts the massive open online courses delivered by the University of Tasmania. The following Terms and Conditions apply.

Introduction

The massive open online courses (“Courses”) are offered to people worldwide who wish to benefit from the health-focussed research and education programs offered by the College of Health & Medicine at the University of Tasmania (“UTAS”). The Courses may include, without limitation, course material, chatrooms, newsgroups, bulletin boards, online forums, websites, information and/or services (collectively referred to herein as the “Content”).

When you sign up for a profile and enrol in a Course you accept these Terms & Conditions and UTAS provides you with access to the Courses at the entry-point URL (https://ms.mooc.utas.edu.au and https://mooc.utas.edu.au collectively defined as the Course “Sites”).

Acceptance of the Terms & Conditions as a binding legal agreement

A “Participant” is a person who signs up to the Sites and agrees to these Terms & Conditions, which thereafter constitute a legally binding agreement between the Participant and UTAS. These Terms & Conditions and the UTAS Privacy Policy together (a) constitute the entire agreement between you and UTAS with respect to your visit or participation in the Courses and use of the Sites, and (b) supersede any prior agreements between you and UTAS with respect to your visit or participation in the Courses or use of the Sites.

A “Visitor” is a person who does not sign up to a Course but browses the Content and Sites using any capable mobile, wireless or other device, which browsing is subject to these Terms & Conditions.

Right to change or modify the terms

UTAS reserves the right to change or modify these Terms & Conditions at its sole discretion at any time without notice. Any change or modification to the terms will be effective immediately upon posting by UTAS on the Sites. UTAS will take reasonable steps to notify you of such changes. You are bound by these changes by your continued use of the Sites after changes have been posted on the Sites.

Access to the Sites

All Participants and Visitors are expected to have up to date anti-virus software when accessing the Sites and to take reasonable steps to prevent malicious attacks to the Sites.

You must not do or seek to do anything that would disassemble or otherwise derive the source code for the Sites, or tamper with the Sites protective mechanisms.

While all reasonable efforts are made to provide continuous access to the Sites, this depends on telecommunications and internet service providers, and UTAS cannot guarantee access to the Sites at all times, including times you may wish to have access.

While all reasonable efforts are made by us to keep the Sites secure, and free from viruses and malicious attack, UTAS cannot guarantee the security of information on the Sites.

Age restrictions

Participation in the Courses and the associated use of the Sites is restricted to persons who are 18 years of age or older, or those who demonstrate parental or guardian consent. The Courses are not available to persons under the age of 13 years.

User Profiles

Visitors may view the Sites and use the Content where it has been made openly available, subject to these Terms & Conditions and any applicable licences, laws and regulations. To participate in a Course you must first sign up on the Courses site for a personal profile (“User Profile”) by providing an email address and a password for your User Profile and you must agree to comply with these Terms and Conditions. You agree not to divulge or share access or information about how to access your User Profile with any other person for any reason.

You may be prompted or required to provide additional information when creating your User Profile including but not limited to your name and date of birth. You represent that all information provided by you is complete and accurate. You agree to update your information to keep it complete, accurate and current. UTAS may terminate your User Profile and access to the Courses at any time with or without notice if any information you provide is inaccurate, misleading or untrue.

Personal information

Personal information collected from you will be managed in accordance with all applicable laws of Australia, and the UTAS Privacy Policy. When you access a Course and the Sites you agree to the collection of personal information by UTAS. UTAS will use this information to:

verify your identity,
create a user profile,
record your participation in the Course,
provide you with information, instruction, feedback and assessment as part of your participation in the Course.

UTAS may provide your information to contracted services providers, such as providers who assist in the delivery of instruction in the Course, or provide other incidental support such as IT services and mailing house providers.

You may access or amend your personal information held by us, or request its removal, by contacting mooc@utas.edu.au. For further information about accessing your personal information and special rights concerning personal data of residents of the European Union, please refer to the UTAS Privacy Policy.

What you consent to by signing up to use the Sites and Courses

By agreeing to these Terms & Conditions you consent and agree to any personally identifiable information you submit to the Sites or Courses being collected, used and disclosed by UTAS in accordance with these Terms & Conditions, the UTAS Privacy Policy, and as permitted or required by law. If you do not agree with these terms, then do not submit any personally identifiable information to the Sites or Courses. Some or all services, including without limitation the Courses, may not be offered or provided, or may not be accessible to you if you choose not to provide personally identifiable information requested by UTAS or you withdraw your consent to use personally identifiable information.

What information is collected

Personally identifiable information (i.e. information that can identify you) is collected by UTAS when you sign up for a User Profile, enrol in a Course, participate in Courses, interact with the Content including in discussion forums, and when you communicate with Course instructors or UTAS. Personally identifiable information about your performance in a Course may also be collected in aggregate form and at the individual participant level.

UTAS may collect, track and aggregate non-identifiable information (i.e. information that cannot identify you) including but not limited to demographic information provided by you when you enrol in a Course, pages that have been visited, when they were visited, the order in which they were visited, and which hyperlinks or other functionalities have been used on the Sites and Courses. UTAS may log the IP address, operating system, browser software and device type used by users of the Sites and Courses, and, from an IP address, UTAS may be able to determine a user’s internet service provider and the geographic location of that user’s point of connectivity. Information is may also be collected through cookies and other typical web analytical tools and methods.

How information is used and shared

UTAS collects personal information such as your gender and occupation when you enrol in a Course. UTAS may use this personal information along with your email address to send you information about other services, products and events of UTAS, its affiliates and/or licensors that is relevant to you because of a particular demographic (e.g. the sector you work in or your location). Preferences for whether and when you would like to hear from us can be set once you have signed up and logged in. Demographic and other non-identifiable information is also used in de-identified aggregate form to gain a better understanding of the educational needs of users and to improve services through analyses of the demographics and the learning behaviours of Course Participants.

Personally identifiable information may be used to respond to your questions, provide you with Courses and/or services through the Sites, and as further provided in these Terms & Conditions. In particular, your personally identifiable information may be used and disclosed as described below:

Communications with UTAS and Course instructors

When you contact UTAS and/or Course instructors, they may use the information provided by you to respond to your communication and/or as described in these Terms & Conditions.

Providing services to you

Personally identifiable information such as your email address and name will be used to provide you with a User Profile allowing you to participate in Courses, engage with the Content including in discussion forums, and otherwise to administer Courses and related services.

Course participation

Personally identifiable information that is collected from you will be used to process and manage your participation in the Courses, including without limitation, tracking your visits, progress and stages of Course completion, and to administer online Course assessments such as quizzes. To the extent required to manage your participation in a Course, your personally identifiable information may be shared with Course instructors and other persons who are designated by the Course instructors to develop, edit, review or modify the Course and/or its Content.

Discussion forums

Forum posts you make containing personally identifiable information may, with your consent, be reposted in current or future Course offerings for reasons including, without limitation, as an exemplar in future courses or as feedback for marketing. Where a posting you make is reposted it will be de-identified, unless you consent to it including your identifiable information (e.g. your name).

Postings (i.e. submissions made through the Sites) made by you of information such as comments, coursework and other content which contain personally identifiable information will be accessible by other Course Participants and users of the Sites where it is posted or communicated to a Course forum, discussion, or other portion of the Sites designed for public communications to other Course Participants or users of the Sites.

Updates

Personally identifiable information such as your email address may be used to send you updates about Site maintenance, Course information, and other services, products and events of UTAS, its affiliates and/or licensors. Preferences for when you would like to hear from us can be set once you have signed up and logged in.

Scientific and educational research

With your consent (which will be sought separately) information collected about you including personally identifiable information may be used for scientific or educational research purposes. All research findings are deidentified and their dissemination does not disclose personal information of research participants.

Disclosures

Personally identifiable information collected from you may be shared:

in response to requests for cooperation from law enforcement bodies or government authorities;
to respond to court orders and defend UTAS, its affiliates and/ or licensors against legal claims or actions;
to prevent, investigate or take action regarding illegal activities or suspected illegal activities, technical issues, or enforce the Terms & Conditions or Privacy Policy or any part thereof;
as required to defend or protect the safety, property or rights of UTAS its affiliates and/or licensors, and the safety, property or rights of others.

Personally identifiable information collected through the Sites may be shared with, assigned or transferred to an acquirer, assignee, or other successor in connection with an acquisition, merger or reorganisation of UTAS, its assets or business.

Records and archives

Personally identifiable information provided by you through the Sites will be recorded and archived in accordance with the uses stated in these Terms & Conditions, the UTAS Privacy Policy, and as required by applicable law.

Links to external websites and service

The Sites and Courses may contain hyperlinks to websites and services that are not owned or operated by UTAS (“Third Party Sites”). No personally identifiable information is disclosed by UTAS to Third Party Sites except as provided in these Terms & Conditions or notified to you at the time of your access to the Third Party Site. You should review the privacy policies of each Third Party Site before you use them and understand that if you use them it is at your own risk. You acknowledge and agree that UTAS and the Course instructors are in no way responsible for the collection and use of your information by Third Party Sites.

Disclaimer of student-university relationship

Participants in the Courses and Visitors to the Sites are not students of UTAS and have no right or entitlement to use any UTAS or any other institution or organisation’s resources or property, intangible or otherwise except as provided for in these Terms & Conditions, which includes without limitation UTAS library resources and IT services.

Certification and credit

Subject to your performance in the Course being assessed as satisfactory, which assessment is in the sole discretion of the instructors of the Course, you may be awarded a certificate acknowledging your completion of the Course. The format and content of any certificate offered will be determined by UTAS and the instructors of the Course. You acknowledge and understand that any certificate, if granted, does not indicate completion of an accredited award course and is not intended to attract any academic credit towards any course offered by UTAS or other institution. You acknowledge that neither UTAS, nor the instructors of the Course, will be involved in any attempt to get the Course recognised as an accredited course at UTAS or another institution.

Right to change or discontinue the Courses and Content

UTAS and the instructors of the Courses reserve the right to cancel, discontinue, interrupt or reschedule the Courses or remove, change or modify the content in whole or in part at any time, with or without notice. You agree that UTAS and the instructors of the Courses, separately or together will have no liability to you for any such actions.

Trademarks

You agree and acknowledge that nothing within the Terms & Conditions, Courses or Sites grants by implication or otherwise provides any licence or right to reproduce, download, distribute, or use any logo or other trademark displayed on the Courses or Sites.

Licence to use the Sites and Course Content

Unless otherwise indicated, all Content made available on or through the Courses and Sites including but not limited to text, layouts, designs, illustrations, images, presentations, displays, documents, audio and video recordings, lectures, lessons, plans, quizzes, assignments, software, code are the property of UTAS and/or its affiliates or licensors and are protected by copyright, trademark, patent and/or other proprietary rights under Australian and foreign law.

Except as otherwise expressly permitted within the Terms & Conditions or on the Sites and Content, UTAS and/or its affiliates and licensors reserve all rights to the Sites, Courses and Content. You must not copy, reproduce, adapt, change, modify, communicate, distribute, transfer, publicly display, publish, sell or commercially exploit any part of the Sites, Courses or Content. This prohibition does not apply to fair academic referencing of the Content within the parameters permitted by copyright law in the relevant country and that includes appropriate acknowledgment. Other non-commercial reproduction and use of course material may be allowed if written consent is sought and granted by the academic lead of the relevant course, and if proper acknowledgment is given.

In consideration of your compliance with the Terms & Conditions, UTAS grants you a free, revocable, worldwide, non-exclusive, non-transferable, non-sublicensable limited right to access and use the Sites, Courses, and Content for your personal study and as necessary for your participation in the Courses. Some individual items of Content in the Courses (where expressly designated in the Content) have been licensed under the terms of a Creative Commons Licence and may be used in accordance with the terms of that licence as has been applied to the individual item.

You must not remove, change or modify any copyright, attribution, proprietary or other legal notice that is affixed, attached or associated with the Sites, Courses or Content.

User Contributions

Participants in the Courses may be provided with the ability to upload, submit, distribute or otherwise make available forum and discussion postings and certain other information including without limitation questions, examples, assignments, and feedback (“User Contributions”). By uploading, submitting, distributing or otherwise making available any User Contributions you represent and warrant that (a) the User Contribution does not infringe, misappropriate or violate the rights of any third party, and (b) you possess all rights, licences, permissions, clearances and consents necessary to reproduce, communicate, distribute and publish the User Contribution and to authorise UTAS and/or its affiliates and licensors and other Participants to use the User Contribution as provided in the licences granted by you below.

You agree and acknowledge that you, and not UTAS or its affiliates/licensors, are responsible for any and all consequences of uploading, submitting, distributing or otherwise making available User Contributions, including without limitation the payment of any third party fees.

Licence granted by you to UTAS

By uploading, submitting, distributing or otherwise making available any User Contributions to the Sites or Courses you hereby grant UTAS and/or its affiliates and licensors a royalty-free, irrevocable, perpetual, transferrable, assignable, sublicensable, worldwide right and non-exclusive licence to host, transfer, reproduce, communicate, distribute, re-distribute, publish, adapt, translate, modify, publicly perform, publicly display, and otherwise use the User Contributions in whole or in part on the Sites and Courses.

Licence granted by you to other Participants

By uploading, submitting, distributing or otherwise making available any User Contributions to the Sites or Courses you grant to each Participant of the Courses a nonexclusive licence to access and use that User Contribution to the extent that it is reasonably necessary to participate in the Courses and for their own personal research or study.

Rules for online conduct

You must:

(a) abide by all applicable local, state, national and international laws, rules and regulations

(b) not use the Courses or Sites to post or disseminate any of the following content (“prohibited content”):

Content that defames, harasses or threatens others;
Content that discusses illegal activities with the intent to commit such activities;
Content that infringes the intellectual property of another, including but not limited to copyright and trademarks;
Content which may breach obligations of confidentiality or fiduciary duties, or the privacy of any person;
Content that is obscene (such as pornographic images), indecent, unlawful, discrimination, harassment, bullying or otherwise may cause harm to another person;
Content containing intentionally deceptive or misleading information, or is in anyway linked to a fraudulent act;
Advertising, marketing content or promotion materials, or any form of commercial solicitation;
Viruses, Trojan horses, worms, time bombs, cancelbots, corrupted files, malware, spyware, adware, or any other software or devices which may damage, harm or otherwise interfere, intercept or expropriate personal information or system data.

(c) not engage in the following activities (“prohibited activities”):

Reproduce (digitally or otherwise), sell, resell or exploit any portion of the Courses or Sites for any purposes including commercial purposes, other than as expressly permitted under these Terms and Conditions;
Access or attempt to access any other user’s profile;
Misrepresent or attempt to misrepresent your identity;
Use the UTAS or partner institution names or trademarks which appear in the Courses or on the Sites in connection with, or to transmit, any unauthorised or unsolicited communications (including emails or tweets);
Use any high-volume, automated, or electronic means to access the Sites (including without limitation robots, spiders, web-scrapers or scripts);
Interfere with the display of the Sites in any way (including without limitation using frames, or placing pop-up windows on or over any part of the Sites’ pages);
Force headers or otherwise interfere with or manipulate identifiers in any way that disguises the origin of any communication transmitted through the Courses;
Interfere with or disrupt the operation of servers or networks connected to the Courses or Sites or breach any regulations, policies or procedures of networks connected to the Courses or Sites.

UTAS may remove offensive or disruptive material whether or not it is prohibited content or a prohibited activity, and may cancel a Participant’s participation, block a Visitor’s access and remove a User Profile at any time with or without notice.

Claims of copyright infringement

If you believe, in good faith, that your content or materials are available on the Sites in such a way that constitute a copyright infringement, or a breach of an agreed licence or contract, please notify us via the Copyright Infringement Notification Form or alternatively address your notification to:

Copyright Officer

University of Tasmania

Private Bag 25 HOBART TAS 7001

utas.copyright@utas.edu.au

Your notification must include (a) sufficient information to enable us to identify the copyrighted work that is the subject of the claimed infringement or, if multiple copyrighted works are involved, a representative list of such works, (b) information reasonably sufficient to permit us to locate and access such material, (c) information reasonably sufficient to permit us to contact you, such as your name, address, telephone number and email address, (d) an indication of whether you are the owner of the content, or if you are acting on their behalf (details of all parties must be supplied including the relationship between them), and (e) an indication of the name of the law (including country) you believe is being transgressed.

Disclaimer of warranties

To the extent permitted by law, UTAS provides no warranty with regard to the suitability of the Course Content for any particular purpose.

Limitation of liability

To the extent permitted by law, and notwithstanding any other provision of these Terms and Conditions, under no circumstances shall UTAS be liable for any consequential, special, incidental, indirect or punitive damages, or any damage or loss of an indirect or consequential nature arising out of or related to access to the Courses, use of the Site or the Content by any user (whether as a Participant or Visitor), including, without limitation, loss of use, loss of revenues, loss of anticipated profits, and cost of capital, whether based upon breach of these Terms and Conditions, warranty, negligence, or any other type of claim, and whether grounded in tort, contract, civil law, or other theories of liability, including strict liability, even if advised in advance of the possibility of such damages.

Indemnity

You agree, to the extent permitted by law, to indemnify and hold harmless UTAS, its subsidiaries and affiliates, and each of its directors, officers, agents, employees, students, fellows, including without limitation the instructors of the Courses, guest lecturers, and Course Content providers from and against any and all third party actions, claims, losses, liabilities, expenses and damages including without limitation legal costs associated with, litigation, judgments or representation arising out of or relating to (a) your use or attempted use of Content provided on the Sites or through the Courses in a manner that breaches these Terms and Conditions, (b) any information including without limitation User Content that you upload, submit, distribute or otherwise make available on the Sites or through the Courses, and (c) your breach of any law or rights of any third party.

Termination rights

You agree that UTAS, in its sole discretion may terminate your participation in the Courses and/or use of the Sites for any reason or no reason and UTAS, its affiliates and/or licensors shall have no liability to you for any such action.

Rights transfer or assignment

UTAS reserves the right to transfer or assign, in whole or in part, its rights and to delegate its obligations under these Terms and Conditions. You agree that you will not delegate, transfer or assign, by operation of law or otherwise any portion of your obligations under these Terms and Conditions without prior written consent from UTAS.

Waiver and severance of terms

A provision of these Terms and Conditions or a right created under it may not be waived or varied except by agreement in writing by the parties. A failure of a party to exercise a right arising out of these Terms and Conditions does not constitute a waiver of that right or other rights existing under these Terms and Conditions. If any provision of these Terms and Conditions is void, voidable or unenforceable but would not be void, voidable or unenforceable if it were read down or is capable of being read down, it must be read down accordingly.

Jurisdiction

These Terms and Conditions are governed by the laws of Tasmania and each party submits to the non-exclusive jurisdiction of the courts of Tasmania.

Contacting UTAS

You may contact UTAS in relation to any of your personal information collected when using UTAS MOOC websites by sending an email to mooc@utas.edu.au

Last updated: Wed, 28 Aug 2019 15:40:00 +1000