From little things, bigger things grow: ACBD CARE program expands to CCS

The Central Clinical School's CARE schematic

The concept of research and consumer partnerships is not a new one, but the scientific community has increasingly recognised its importance in recent years, with a growing proportion of funding bodies now recommending or requiring consumer engagement for grant pitches. 

The Central Clinical School's Consumer and Researcher Engagement (CCS CARE) program initially developed by researchers and staff within Australian Centre for Blood Diseases (ACBD), is now seeing a growth and roll out at the school-wide level. This growth is remarkable given that the CARE program was only officially launched in February of this year (ccsmonash.blogspot.com/2021/03/launch-of-acbds-community-engagement.html).

The CCS CARE program is defined by a genuine drive to establish authentic, long-term connections between researchers and consumers, to generate mutually-beneficial outcomes.The  was founded upon the firm belief that engagement with people impacted by the health conditions that we study is vital to ensure that our research is focused on those most affected by those diseases and conditions. The program aims to ensure that medical research on the precinct is appropriate, accessible and relevant to consumers - also commonly known as persons with lived experience or advocates. 

Levels of consumer involvement are tailored to an individual's preferences and time availability. Different levels of engagement available include:

• Academic research engagement: contributing to grant proposals and plain language summaries of research findings
• Networking: including meet-and-greet sessions with researchers and students, symposiums and seminars
• Media engagement: contributing to the preparation of articles and advocating research activities at the CCS.

The program has to date seen a total of 41 expressions of interest registered by consumers, with 12 now in an active partnership with relevant researchers on campus. A total of 13 expressions of interest by researchers have been registered, with 7 soon to be in an active partnership. 

As part of the program's expansion, it has relocated and updated its webpage, which you are invited to visit: www.monash.edu/medicine/ccs/community-engagement

The Head of CCS, Professor Terry O'Brien, has recognised the value of the ACBD CARE initiative, formally endorsing the program’s roll out at the school-wide level. Prof O'Brien said, “I have heard that this program is benefitting researchers within the ACBD from the CARE program committee, in particular for non-clinician researchers. As clinicians we see and interact with patients on a routine basis. Patients play an essential role in their care by contributing insights which help to manage their health conditions. We recognise that these insights are also important in informing and enriching our valuable translational research and that’s why we are delighted to have this program extended to members of the CCS”.

The first department to take up the program as part of the roll out is the Department of Neuroscience. It has had four researchers formally join the program, Dr Bridgette Semple (Paediatric neurotrauma / Traumatic brain injury), Dr Mastura Monif (Neuroinflammation and Neuroimmunology), Dr Lucy Vivash (Neuroimaging - Dementia and Neurodegenerative diseases) and Associate Professor David Wright (Imaging - Motor Neuron Disease) who would like to engage with consumers in the community in their respective areas of focus. 

The researchers are now looking to connect with consumers in these areas, with recruitment being conducted through a combination approach on social media channels (e.g. Twitter @ccs_cares), the webpage, and other avenues of advertisement (e.g. through partner and consumer advocacy organisations).

The CARE program was primarily developed to help establish and support mutually beneficial, respectful and productive partnerships between researchers and members of the community (termed consumers) with a lived experience of a health condition or disease they study.

“We also wanted to develop a program that provides researchers with an easy way of connecting with the community and disseminating their exciting research findings into the public domain.” Co-founder and Chair of the CARE program, Dr Catherine Carmichael.

The enthusiasm for the program among both researchers and consumers has far exceeded the CARE program founders’ initial expectations. Dr Carmichael also said, “We are so excited to be expanding into the CCS more broadly just 6 months after launching.”

An initial donation from the Alfred Foundation was provided to support the establishment of the program and employment of a Consumer Coordinator to work as a bridge between consumers and researchers in the school to facilitate the partnerships. The foundation acts as a key enabler through which individuals, community groups and organisations can contribute to The Alfred's role in saving lives, improving the health of our community, and advancing medical research. 

The CARE program is aligned with The Alfred that strongly values patients being involved in the quality of care that they are provided through their Patients Come First strategy, and Monash Partners, which supports the involvement of health care consumers and the community in research, health care improvement and innovation.

The CARE program enables pairing of consumers and advocates with emerging researchers working at the CCS. As active members of the CARE program, Ms Anna Steiner (Consumer committee member) and Dr Cedric Tremblay have had an ongoing partnership since 2020 (see their video). By sharing their respective expertise, they also share a common goal of improving the health of Australians. Ms Anna Steiner commented, 

“The CARE program gives a crucial voice to consumers - patients and carers - and enables them to support, engage with and contribute to research team projects, offer a focus and perspective on patient experiences and also encourage researchers and clinicians to advance medical research and care with an emphasis on and understanding of patient needs and priorities.”

With regular communication and exchange of constructive feedback, their journey has developed and grown into a very rewarding professional relationship - an empowering experience for Ms Steiner and a very enlightening one for Dr Tremblay. As a medical researcher, Dr Tremblay feels that the CARE program provides a much-needed perspective for identifying urgent and critical unmet needs for Australians living with health conditions. “It is a very rewarding experience that keeps the focus on the patients, not the health challenges. This program is a game-changer in the field of medical research performed at the CCS,” he said.

Public outreach

A key part of the program involves holding seminars or webinars with researchers and consumers to raise awareness of a challenge or issue and discuss its latest research. The inaugural webinar (see published video) was held on Thursday 7 October, 5:30 - 7pm with the topic, 'Blood not bone marrow? The potential role for blood testing to improve multiple myeloma diagnosis and therapy'.

Prof Andrew Spencer, Dr Durga Mithraprabhu and
Dr Nick Bingham explain the research for liquid biopsy
vs bone marrow test for multiple myeloma.
See video 1:30:12 hours

Presentations were given by members of the Spencer lab in the Australian Centre for Blood Diseases, as well as their consumer partner Mr Henry Blatman and a representative of Myeloma Australia, Ms Hayley Beer.

334 people registered for the webinar, and nearly 200 attended on the night. The CARE program committee has received wonderful feedback from attendees, who really appreciated the time taken by expert speakers to present their research to the community, as well as hearing the inspiring personal story given by Henry.

If you would like to view a recording of the webinar, see the event webpage or the CCS Youtube channel video.

Meet the growing team!

The CARE committee has expanded to a collective 13 members, including two consumer representatives, with three new members from the Department of Neuroscience and one new member from the Department of Immunology and Pathology, with two previous members leaving to pursue other activities (A/Prof Matthew McCormack and Ms Jen Cheung). A dedicated CARE social media team has also recently been established for the purposes of developing the @ccs_cares Twitter account. 

Co-founder and Deputy Chair of the CARE program, Dr Karen Alt commented, “I’m so proud to be working with this incredible team to ‘close the gap’ that exists between the researcher and the community. Seeing what we have achieved over the last 6 months, together -  I am excited about what the future holds.”

CARE committee members

    • Chair: Dr. Catherine Carmichael
    • Deputy Chair: Dr. Karen Alt
    • Consumer Representative: Mr Ken Young
    • Consumer Representative: Ms Anna Steiner
    • Dr. Donia Moujalled
    • Dr. Cedric Tremblay
    • Dr. Fiona Brown
    • Dr. Michelle Zajac
    • Dr. Ioanna Savvidou
    • Dr. Loretta Piccenna
    • Dr. Bridgette Semple
    • Ms. Tiffany Rushen
    • Dr. Arwel Jones

CARE Consumer Engagement Coordinator

• Ms. Ange Bishop

CARE Social media team

    • Ms. Jurie Taskandi
    • Dr. Omar Ibrahim
    • Dr. Juliana de Castro