The Webinar Series

White Coats Foundation Presents, a Two-Part Webinar

De-Mystifying Consumer and Community Involvement in Research

The Webinar Journey & Purpose

What is consumer and community involvement in research? Who are consumers? How can consumers use their knowledge, experience and insights to improve research, clinical care and outcomes for patients?

“As the users of health and medical services, consumers can provide valuable input to health and medical research. If such research is to continue to provide high quality outcomes, it is important that consumer involvement in research and its ongoing development is facilitated. This includes participation by consumers as equal partners in the development of research goals, questions, strategies, methodologies and information dissemination”- Statement on Consumer and Community Participation in Health and Medical Research, NHMRC and Consumer’s Health Forum of Australia, 2002.

Consumer participation in health in medical research has for a long time primarily been associated with participation as a ‘subject’ or clinical trial participant in a research trial. The scope for consumer involvement is much broader than this but how are we involving consumers and how are consumers being engaged in the broader scope of opportunities?

The White Coats Foundation takes a deep dive into “de-mystifying” consumer and community involvement in research via a two-part webinar series that aims to explore these issues and more.

The webinar series is an opportunity for stakeholders with an interest in or focus on consumer and community involvement in research to ask questions, share experiences, listen and learn from others who are effectively involving consumers in research. In bringing key stakeholders together we hope to raise awareness; foster improved understanding; help reduce duplication of effort, encourage collaboration, and identify any gaps in progress on current efforts to involve consumers

We aimed to:

Provide clarification on what “consumer and community involvement” in research means.
Provide insight into the training options available to support consumers with basic skills and knowledge to effectively engage in research.
Explore the barriers to consumer engagement.
Explore pathways that can facilitate the connection of researchers and consumers. These avenues are underdeveloped and need to be reviewed.
Explore feedback mechanisms to consumers on outcomes of involvement and ensure participation is value adding.

The Paper

The discussion, questions and feedback throughout both webinars was passionate, inspiring and led to some interesting perspectives which we now share as a ‘Reflections Paper’- summarising key messages, recommendations and next steps from the series.

The Webinars

Webinar 1 -The Presentations

Wednesday, September 15th, 2021 – 1pm

This webinar includes presentations from key leaders on consumer and community involvement in research on 3 key topics with an opportunity for attendee interaction and discussion. We aim to clarify what consumer and community involvement in research means and look at the different ways in which consumers can be involved with reference to real life examples of consumer participation in research. We also explore the training options available to support consumer involvement in research and the benefits and value of training programs.

Watch Part 1 of Webinar

Webinar 2 - The Discussion

Wednesday, September 22nd, 2021 – 1pm

This webinar is a facilitated discussion with an expert panel and attendee participation. Three key topics have been selected for interactive discussion:

How do consumers learn about and access opportunities to be involved in research?
What are the barriers to consumer engagement?
How do we ensure consumer involvement in research is value adding and not a tokenistic exercise?

Watch Part 2 of Webinar

Our Speakers & Panel Members

Jane Hobson

Senior Adviser, Research Management - Cancer Council NSW

About

Jane heads Cancer Council NSW’s $10 million annual research grant funding program and has previously held senior positions at Australian universities creating and implementing strategies for research and researcher development.

Leanne Weeks

Programme Director, CT:IQ & Programme Manager, Bellberry Limited

About

Leanne has over 12 years of diverse bio-pharma research and development experience, including managing clinical trials and programmes of trials for pharma’s and CROs across Australia, New Zealand, the UK and Europe. Leanne is now the Programme Director of Clinical Trials: Impact & Quality (CT:IQ), an MTPConnect funded initiative bringing the clinical trial sector together to develop and implement recommendations that will improve the impact, quality and efficiency of clinical trials.

A/Prof Christine Chaffer

Head – Cancer Cell Plasticity Laboratory, Garvan Institute of Medical Research, Sydney

About

Christine’s research focuses on developing new therapies for cancer patients to prevent the development of metastasis and chemotherapy-resistant disease. She obtained her PhD from The University of Melbourne, and completed her post-doctoral studies at MIT, Boston, USA.

George Kiossoglou

Consumer Representative, WEHI and MACH and the AHRA/CCI initiative (VIC)

About

George spent 41 years working in the IT industry before retiring in 2016. In April 2013 he was diagnosed with Acute Myeloid Leukaemia and underwent chemotherapy followed by an Allogenic Stem Cell in the same year. He is on various Grant Review Boards, various committees, including, Melbourne Health Ethics Committee, a Consumer Representative for WEHI and MACH and the AHRA/CCI initiative

Lee Hunt

Cancer Consumer and Advocate

About

Lee has been involved as a cancer consumer and advocate since undergoing Consumers Involved in Research training in 2014 at Cancer Council NSW. She is an Executive Member of Cancer Voices and sits on the Faculty of Radiation Oncology Council. Lee is a member of several cancer research projects, clinical trials, and cancer committees and has made presentations at both national and international conferences.

Angela Todd

Research Director Sydney Health Partners

About

Angela has worked across health and research sectors in Australia and Canada. In her current work with Sydney Health Partners she leads various research improvement strategies including promoting consumer and community involvement in health research.

Lisa Carstairs

Consumer Advocate

About

Lisa is a proud Aboriginal woman who has extensive first-hand experience across the cancer consumer spectrum; first having been diagnosed with advanced breast cancer in 2008, undergoing lengthy multi-chemotherapy treatment variants, radiation therapy and subsequent cancer diagnoses. As a Cancer Voices consumer representative, she relishes the opportunity to work with cancer research teams. Lisa has seen first-hand how feedback, through her cancer journey, can make a significant difference for people undergoing cancer treatments in the future. Additionally, she has extensive experience working in the federal health sector and RANZCR, specialising in improving Aboriginal health outcomes.

Sarah Lukeman

Community Engagement Coordinator, Hunter Cancer Research Alliance

About

Sarah has been a trained consumer involved with cancer research since 2016, partnering with a number of basic-science researchers and sitting on funding panels. She helps HCRA researchers involve consumers in their research and connects them to the Consumer Advisory Panel she mentors and supports.

Anne McKenzie

Telethon Kids

About

Anne McKenzie AM has held professional and voluntary roles as a consumer advocate for the past three decades. Since 2004, Anne has worked in research organisations to increase the community voice in research and has developed organisational frameworks for engagement, training and resources.

Jill Yates

Consumer Advocate

About

After careers in teaching and law, Jill retired around 10 years ago following a breast cancer diagnosis. Since that time, Jill has been involved in a wide range of consumer roles which she has found very rewarding.

Zy Phillips

Consumer Advocate

About

Zy is a father of two special children with high needs. Together with his wife Brita, they are making it work one day at a time.

Cathy Florek

Director, Head of Engagement Strategy - Bristol Myers Squibb

About

Cathy has been with Bristol Myers Squibb, based in Princeton, New Jersey for over 30 years, spending the majority of her time in R&D. In her current role as Head of Clinical Trial Engagement Strategy within Global Development Operations. She oversees a team of Engagement Strategy Leads who focus on bringing the voice patients, caregivers and sites into our trial designs and implementation, with a goal to drive meaningful change, improved experience, and generate greater patient diversity in our clinical trials.