C24. Community Involvement in Clinical Trials
Tracks
Diversity, Inclusiveness and Consumer Engagement
Friday, June 14, 2024 |
4:30 PM - 5:30 PM |
C2.5+C2.6 |
Chair & Speakers
Mariam Hachem
Clinical Trial Manager
University of Melbourne
Chair: Community Involvement in Clinical Trials
Biography
Mariam Hachem is the Clinical Trial Manager for the FlashGM Study, Australia's first diabetes device randomised controlled trial for Aboriginal and Torres Strait Islander people with type 2 diabetes using continuous glucose monitors. She is also completing her PhD at the University of Melbourne investigating the challenges of diabetes and its innovations in resource-challenged settings. She is also the Victorian Branch President of the Public Health Association of Australia.
Ray Kelly
Researcher
University of Melbourne
Community Involvement in Clinical Trials
Biography
Ray Kelly is a proud Gamilaroi man and one of Australia’s leading health professionals, with over 33 years’ experience in the health and sports industries. He is an Accredited Exercise Physiologist and with a Master of Teaching (PDHPE) and a Bachelor of Research where he focused on the reversal of type 2 diabetes in the Indigenous community. He is currently completing his Doctor of Philosophy in Analysis of the factors contributing to successful reversal of type 2 diabetes through lifestyle change by Indigenous people in Australia.
Ray has recently authored 3 sections (Physical Activity, Healthy Eating, and Overweight/Obesity) in the updated RACGP/NACCHO 'National guide to a preventive health assessment for Aboriginal and Torres Strait Islander people'. He is also on the Leadership Group for the Department of Health and Aged Care's '24-hour Guide'.
Currently, Ray provides research-based training and education to GPs, nurses, and other health professionals working in Aboriginal health services. He then provides support as they embed these changes within their current treatments. This had led to decreases in blood pressure, HbA1c and the co-morbidities associated with these conditions. Often, patients also see a reduction in medications. He also recently co-hosted the 3-part series on remission of type 2 diabetes alongside Dr Michael Mosley for SBS.
Ms Gudrun Wells
Research Officer
CT:IQ
Chair: Beyond the Form
Abstract
Projects such as CT:IQ’s InFORMed have worked to simplify the informed consent process for research. While this is an important part of participant communication, how research teams and participants communicate during a project and at its end is also crucial to both the integrity of the research and the participant experience.
This project was initiated by a consumer representative and has included consumers and site and sponsor representatives throughout to investigate how we as a sector can better communicate throughout the research lifecycle. The Beyond the Form team have reviewed the published literature, asked people who work in Australian clinical research, and people who have participated in this research how they would like to communicate in interviews and workshops. The next stage of the project will be investigating concrete, achievable suggestions for the sector to implement.
This presentation summarises what we have found so far and outlines our next steps. We will be asking the audience to think about how we can meet participant expectations within budgetary and regulatory constraints.
This project was initiated by a consumer representative and has included consumers and site and sponsor representatives throughout to investigate how we as a sector can better communicate throughout the research lifecycle. The Beyond the Form team have reviewed the published literature, asked people who work in Australian clinical research, and people who have participated in this research how they would like to communicate in interviews and workshops. The next stage of the project will be investigating concrete, achievable suggestions for the sector to implement.
This presentation summarises what we have found so far and outlines our next steps. We will be asking the audience to think about how we can meet participant expectations within budgetary and regulatory constraints.
Biography
Before coming to CT:IQ Gudrun worked as a clinical trial coordinator in a range of health conditions and has also worked in Research Governance simplifying clinical research approval processes. At CT:IQ Gudrun is inspired to make it easier to conduct good clinical research that delivers great results and is respectful to participants.
Sarah Lukeman
Consumer Representative
CT:IQ
Beyond the Form
Abstract
Projects such as CT:IQ’s InFORMed have worked to simplify the informed consent process for research. While this is an important part of participant communication, how research teams and participants communicate during a project and at its end is also crucial to both the integrity of the research and the participant experience.
This project was initiated by a consumer representative and has included consumers and site and sponsor representatives throughout to investigate how we as a sector can better communicate throughout the research lifecycle. The Beyond the Form team have reviewed the published literature, asked people who work in Australian clinical research, and people who have participated in this research how they would like to communicate in interviews and workshops. The next stage of the project will be investigating concrete, achievable suggestions for the sector to implement.
This presentation summarises what we have found so far and outlines our next steps. We will be asking the audience to think about how we can meet participant expectations within budgetary and regulatory constraints.
This project was initiated by a consumer representative and has included consumers and site and sponsor representatives throughout to investigate how we as a sector can better communicate throughout the research lifecycle. The Beyond the Form team have reviewed the published literature, asked people who work in Australian clinical research, and people who have participated in this research how they would like to communicate in interviews and workshops. The next stage of the project will be investigating concrete, achievable suggestions for the sector to implement.
This presentation summarises what we have found so far and outlines our next steps. We will be asking the audience to think about how we can meet participant expectations within budgetary and regulatory constraints.
Biography
Sarah Lukeman is a cancer survivor, clinical trial participant and experienced health consumer advocate and representative. She is Co-Deputy Chair of Cancer Voices NSW and has been on their Executive Committee since 2017 and was elected to the Cancer Council NSW Board in December 2023. She has been a team member of the Clinical Trials: Impact and Quality (CT:IQ) InFORMed project since 2020 and the Beyond the Form project since its inception in 2022.
Sarah was the Community Engagement Coordinator for the Hunter Cancer Research Alliance (HCRA) for 2 years, where she supported consumers and researchers to work together through training, mentoring and administrative support. She is a consumer buddy for a number of discovery science cancer researchers in NSW and Victoria and has been on the organising committee of the Hunter Cancer Research Symposium in 2020 and 2021 and the 2023 NSW Cancer Conference.
Sarah is regularly invited to speak on Consumer Involvement in Research (CIR) and has presented at ARCS and SCRS events. She has co-designed and co-presented training on CIR for Health Consumers NSW and NSW Regional Health Partners (NSWRHP).
Sarah lives in regional NSW and advocates for equitable access to healthcare and a just transition for mining communities. Sarah feels privileged to have grey hair and wrinkles and to have seen her daughters grow up.
Ms Eleonora Kay
Clinical Trial Innovations Project Manager
VCCC Alliance
Beyond the Form
Biography
With over a decade of experience in translational research, Eleonora has brought her background in clinical trials and arbovirus molecular genetics to her current role managing the Clinical Trial Innovations program at the VCCC Alliance. She is passionate about personalised care and patient-centered research, with a particular focus on addressing the disparity in healthcare outcomes among populations. Via capacity building, workforce upskilling, and the research and implementation of innovative research methodologies, Eleonora's current work aims to facilitate an innovative, high-performance clinical trial sector. She is excited for the opportunity that Beyond the Form presents to shed light on the impacts of communication and participant rapport in clinical research.