Register to participate in Working Group activities

A key deliverable for the project is the development of a FHIR implementation guide (FHIR IG) to enable data sharing among organisations operating residential aged care facilities. Working Groups will be established to develop the FHIR IG. The purpose of the Working Groups is to provide a forum for stakeholders with residential aged care industry knowledge to collaborate with those with FHIR expertise and experience in developing and validating FHIR artefacts for the Aged Care Data Compare project. The Working Groups will consist of a Clinical and Expert-User Working Group and a Technical Working Group.

The Working Groups will:

• Define and validate clinical content for the use case relevant to this project;
• Define and validate the information models and value sets;
• Consider recommendations for implementation, including but not limited to:
  • Search capability
  • The use of terminology maps and the impacts on data quality
• Develop and validate the FHIR Implementation Guide

There are no restrictions on individuals becoming members of the Working Groups. Individuals with interest, expertise or experience across the Clinical and Technical Working Groups may join both groups. Members of the Working Groups commit to the following:

• Faithfully make contributions to group activities
• Respectful participation in meetings
• Identify and share issues relevant to their areas of expertise
• Act on allocated tasks within agreed timeframes
• Review content and provide input outside of meetings where necessary as agreed with other group members
• Share and discuss content with their colleagues
• Notify the secretariat via email or phone prior to a session when unable to attend the session in question

Three forums for each Working Group will be held per year. Due to the current COVID-19-related restrictions on public gatherings, the Working Group forums will be held virtually via teleconference. The length of these forums will depend on each agenda but expected to last a few hours. The virtual forums will be replaced by in-person meetings when the current COVID-19 restrictions are finally lifted. In-person meetings will be subject to observation of any relevant COVID-19 social/physical distancing requirements in place in the jurisdiction where meeting is held. In addition to the forums, 1-hour teleconferences will be held approximately once a week or as necessary to progress the project. All meetings will be organised by the University of Queensland (UQ) and communicated to members in advance of meeting dates. The frequency and duration of the forums and weekly teleconferences may be varied over the course of the project as necessary to achieve the goals of the project timely and may depend on availability of funding.

Participation in meetings is optional and members may withdraw anytime. Minutes of each meeting will be posted on the publicly accessible project Confluence site.

Please note that UQ does not provide funding for individual members to attend these meetings.

Participation in the Working Groups is voluntary and participants can withdraw at any time. Contributions from individuals may be recorded on the publicly accessible project webpage and/or a Microsoft Teams environment for the project and be used to inform and communicate project outcomes. A link to the project webpage and/or an invitation Microsoft Teams environment will be distributed to members along with meeting agendas and minutes.

In delivering the project objectives, decisions and positions taken by the Working groups are made by consensus and outcomes will be shared broadly with the community of interest and in published documentation, including peak bodies. Representation on the Working Groups will be invited from the following organisations, but not limited to:

• Aged care software vendors
• Aged care provider organisations
• Clinicians
• Commonwealth Scientific and Industrial Research Organisation (CSIRO)
• Australian Digital Health Agency (ADHA)
• Department of Health
• Aged Care Industry IT Council (Aged Care Information Technology Industry Council)
• Australian Institute of Health and Welfare
• Medical Software Industry Association (MSIA)
• Australasian Institute of Digital Health (AIDH)
• HL7 Australia and HL7 International

Through participation in this project Working Group members will be making a valuable contribution to the advancement of standards-based interoperability within the aged care sector but will not realise financial benefit as a result of such participation. However, by participating, members may build or improve their own interoperability and FHIR skills. Similarly, this project may help participating organisations in building interoperability and FHIR expertise within their own organisations.

UQ does not foresee any risk associated with participating in Working Group activities in the project.

This project complies with the values, principles, governance and review process specified in the National Health and Medical Research Council (NHMRC) National Statement on Ethical Conduct in Human Research (2007). A copy of the National Statement can be found at https://www.nhmrc.gov.au/about-us/publications/national-statement-ethical-conduct-human-research-2007-updated-2018.

The project has been approved by a Human Research Ethics Committee at UQ (Approval number: 2020001496). Further information regarding ethics matters related to this project or if you wish to register a formal complaint about the conduct of this project, please contact medicinelnr@uq.edu.au. You may also contact the Ethics Coordinator on +61 7 3365 3924/ +61 7 3443 1656 or email humanethics@research.uq.edu.au.

Members are free to withdraw at any time during the project. However, any contributions made to the project by participating members prior to withdrawal are an integral part of the history of the project. Furthermore, personal information (names & email addresses) provided at the signing up for membership will be maintained on the list of project participants after withdrawal.

Personal information of Working Group members is protected by the Privacy Act 1988 (Cth) and UQ will handle such information in accordance with this Act and the NHMRC National Statement on Ethical Conduct in Human Research (2007, Updated 2018) as amended from time to time.

The personal information provided by Working Group members including name, email address, affiliations will be used to maintain a record of contributors to the project. Any opinions, ideas, input, or content provided by members will be collected for the purpose of achieving the objectives of this project and any related research which may emanate from this project.

The personal information members provide while participating in the project may be posted on the publicly accessible project webpage and Microsoft Teams environment for the project. This is in line with the principles of open and transparent co-design and co-develop of health data exchange standards. The publicly accessible project webpage allows read-only access to anyone in the world, while write-access requires user registration. Working Group members will be free to register on the project webpage as an avenue to make contributions to the project. Upon registration, members will be invited into the Microsoft Teams environment for the project. Any comments or attachments posted on the project webpage and/or Microsoft Teams environment will include attribution to the user as part of the process.

UQ has obligations under the Australian Privacy Principles, in particular principle 8 (APP 8), when disclosing data overseas. Where an individual consents to an overseas disclosure, UQ is no longer obliged to abide by the Australian Privacy Principles. By participating in the project and therefore agreeing to the terms of reference described here, you are consenting to your personal information being published on the Aged Care Data Compare project webpage, which is accessible by anyone in the world, and acknowledging that UQ is not required to comply with APP 8 in relation to that information.

The reports, content, software artefacts and standards developed during the course of the project will not contain information directly attributable to individual Working Group members but will instead reflect the collective group development and consensus-based decisions taken during the collaborative processes of the Working Groups.

This study adheres to the Guidelines of the ethical review process of The University of Queensland and the National Statement on Ethical Conduct in Human Research. Whilst you are free to discuss your participation in this study with the researcher contactable on r.dendere@uq.edu.au. If you would like to speak to an officer of the University not involved in the study, you may contact the Ethics Coordinator on +61 7 3365 3924/ +61 7 3443 1656 or email humanethics@research.uq.edu.au

Contact details for the project team at University of Queensland are given below:

Dr Ronald Dendere – Postdoctoral Research Fellow (Health Informatics)
Centre for Health Services Research, Faculty of Medicine
The University of Queensland – Herston Campus
Oral Health Centre, Level 6, 288 Herston Rd
Herston QLD 4006, Australia
Email: r.dendere@uq.edu.au
Phone: +61 7 3346 5341

Dr Murray Hargrave - Project Coordinator & Research Development Manager (Digital Health)
Centre for Health Services Research, Faculty of Medicine
The University of Queensland – Herston Campus
Oral Health Centre, Level 6, 288 Herston Rd
Herston QLD 4006, Australia
Email: m.hargrave@uq.edu.au
Phone: +61 7 3346 5349

Dr Natasha Reid – Postdoctoral Research Fellow (Quality Indicators)
Centre for Health Services Research, Faculty of Medicine, The University of Queensland
Level 2, Building 33, Princess Alexandra Hospital
Woolloongabba, QLD 4102, Australia
Email: n.reid@uq.edu.au

Associate Professor Jason Ferris - Program Leader: Research and Statistical Support Service
Centre for Health Services Research
Room 5017, Translational Research Institute
37 Kent Road
Woolloongabba, QLD 4102, Australia
Email: j.ferris@uq.edu.au
Phone: + 61 7 3443 7050

Professor Len Gray – Director Centre for Health Services Research
Centre for Health Services Research, Faculty of Medicine, The University of Queensland
Level 2, Building 33, Princess Alexandra Hospital
Woolloongabba, QLD 4102, Australia
Email: len.gray@uq.edu.au
Phone: +61 7 3176 5530

By completing the form below to become a participating member of one or both project Working Groups I:

1. Acknowledge that I have read and understand the above Terms of Reference and I voluntarily consent to take part in the research project entitled: “Aged Care Data Compare” on those terms.
2. Acknowledge that an opportunity has been given to me to discuss the project with the project investigators and to ask questions.
3. Agree to the collection, use and disclosure of my personal information as set out in the above Terms of Reference.
4. Understand and agree that by consenting to the personal information I provide being published on the project webpage, which is accessible world-wide, that UQ is not required to comply with APP 8 in relation to that information.
5. I understand that my participation is voluntary and I am free to withdraw from this research at any time without needing to provide any explanation, and that withdrawal will not affect my relationship with the researchers or The University of Queensland. If I choose to withdraw, all information collected about me may continue to be used after withdrawal.
6. Recognise that my participation in this work will assist with the advancement of standards-based interoperability within the aged care sector, and that I may not benefit personally from the research.
7. Agree that the personal information I provide for this project may be used for future iterations of this project and/or related scientific research that may extend from this project.
8. I understand that this research adheres to the Guidelines of the ethical review process of The University of Queensland and the National Statement on Ethical Conduct in Human Research. I have been provided with contact details of the researcher, as well as UQ Ethics Coordinator.

Complete the registation form