"To me, trials are about giving patients hope and options with steps towards regaining some freedom. It's also about all the people combining their expertise to deliver treatments for unmet needs."

As a looked over the most beautiful sunset I had ever seen, in a country I had never been to, I found it hard to believe that two little pills had made it all possible. Because of a clinical trial my world had become bigger and brighter than I could have ever imagined the morning I stepped into my first trial visit

In the last week of April, we crowdsourced from our social and professional networks on Twitter, Facebook and Instagram what clinical trials mean to people in one word. This wordcloud is the resulting image for all 333 voices that submitted a word. No submitted words were omitted. 

The image was created last year during covid to connect with our participants in our clinical trial that started in July. Right in the middle of state closures and lock down. We used the image again as part of the Xmas card that goes to all registered research participants at the Brain and Mind Centre Parkinson’s Disease Clinic.

For clinical trials to realise their full potential for all communities, we must work together to promote equity of access through education (of our clinical trials workforce, patients, participants and communities), develop strong and inclusive partnership models and ensure that our commitment to safety and welfare is always balanced against our desire to progress

I have worked in clinical trials for more than 20 but it felt the most real this last 12 months because cancer found my mum. Clinical trials and their value had a whole new meaning for me. 

‘For patients with a life threatening disease, clinical trials are more than hope, they offer the patient a second chance of life. Lee was diagnosed with an aggressive grade three cancer. It was a new targeted therapy, which had proceeded through the three stages of Clinical Trials, that gave her a second chance to enjoy a much longer cancer-free period. Prior to the development of this targeted therapy, the chance of an early recurrence was far greater. She was so grateful to be given this second chance.’

I am a very, very lucky woman & recently it has become a passion to want to share my inspirational story with others and to let them know that just when you think there's nothing left, you can never give up

"As the mother of three boys born premature, I knew I wanted to use that experience to change the journey for others and in 2005 Miracle Babies was formed. 7 years later, I was the first parent to be invited onto a neonatal trial as an Associate Investigator and asked to present at the Vermont Oxford Network Annual Congress in Chicago to more than 1200 delegates representing 900 NICUs. I was awarded an Honorary Research Associate with the University of Sydney and invited onto a number of other trials. In 2019, I won the inaugural ACTA Consumer Involvement Award for my involvement in obtaining waiver of consent in a neonatal trial and last year become the first parent to be a Chief Investigator on a MRFF funded trial. Collaboration between researchers and consumers works. We are proof of that. I now dedicate most of my time as a consumer advocate working with researchers and growing a team of consumer representatives involved in all aspects of research. We are able to use our lived experience to help set research priorities, design and promote trials, help disseminate results and more. One of my goals is to educate parents on the value of research to the level, where on admission into a NICU, one of the first questions they ask is “Are there any trials my baby can join?”

My clinical trial gave me: KNOWLEDGE about my own health and the researchers more KNOWLEDGE about my disease. ACCESS to treatment. HOPE that more treatments would evolve. TIME to live longer.

My artwork depicts my experiences with the clinical trials and what the future holds. I was a clinical trials coordinator in my past life and clinical trials mean a lot to me. I have seen hope in my patients’ faces when they responded to a treatment. I have seen their smiles and laughter when their quality of life improved. My tree of life is leaning forwards towards the all energy giving Sun, which symbolizes clinical trials. The sun-rays are a metaphor of hope, the smiles and the laughter, giving strength to the tree of life. The Cancer-free survival curve is flat and symbolises a future where all the patients are cancer free FOREVER irrespective of cancer type or stage.

Our hand crafted tree is representative of life and growth, while the green leaves depict hope and renewal aligning with BMS’s dedication towards helping patients prevail over serious diseases. The image of our teams hands as the leaves, similarly to the BMS logo, represents giving and receiving care where the focus is on the outcomes for patients. Finally, the collaborative effort to create the tree also pulls in the individuals that come to work every day to be able to contribute towards a better future for patients and the importance of what clinical trials means to us.

As a scientist, a mum with young kids, and a rare cancer patient (I have stage 4 clear cell ovarian cancer) clinical trials can ultimately mean hope for me, and the potential see my girls grow up. But they also mean a lot of other things. They are critical for advances in science and for more treatment options to become available – innovation and research can change the story for patients like me. However, I am excluded from many trials due to my rare pathology, which can be frustrating. I have had to self-fund my latest drug combo to stay alive, which costs $12,00 a month! That said, I am using clinical trial data from other, similar diseases to shape my own successful treatment. In a way I am my own clinical trial! In an ideal world all patients would have access to clinical trials, regardless of where they live, their disease, or their background