Your Voice, Your Story
Submissions are open for this year's YVYS 2024
We all have a story to tell.
Perhaps you are a patient who has benefited from participating in a clinical trial, a recipient of an approved medication that is available because of a clinical trial, a health care professional who supports patients on clinical trials or an industry professional who is witness to the impact that medical advances can bring to people’s lives. Perhaps clinical trials are a mystery or complicated to understand. Whatever the circumstances, we want to hear people’s voices and see their stories.
You don’t have to have participated in a clinical trial to enter – we want to hear everyone’s thoughts!
The Idea
Sometimes it is difficult to put feelings into words. White Coats Foundation invites people to express their “Voice” by creating a picture, painting, symbol or sending in a photo that represents what clinical trials mean to them.
This year, 2024, Your Voice Your Story is a little different!
We are creating a video with Your Voice Your Story entries, past and present, and we need your help.
Simply submit a picture, painting, photo, or symbol with a short blurb explaining how your piece of art reflects what clinical trials mean to you.
Every submission will be featured in our online gallery, and we will select some entries to be showcased in our video. WCF Your Voice Your Story video will appear across our channels during the month of May (and June ) to celebrate International Clinical Trials Day and will help raise awareness of clinical trials & research and their role in health care.
This year, WCF is also giving away a $100 Australia Post/ Mastercard Gift Card to the first 5 entries for 2024—a gift from us to you.
All 2024 entries will receive a White Coats Foundation Keep Cup as a thank-you for your submission.
We continue to welcome entries from patients, family members, health care professionals and industry professionals. We want to connect with ALL communities, a diverse range of people and cultures. The stories may be uplifting or heartbreaking, thought-provoking and educational. Stories are what connect us as humans and this initiative is an opportunity to create an image that is both personal and powerful.
Hurry Entries Close May 10th, 2024
Please note: if your submission is selected for final video the image, title, description, your first name and state or territory will be shared in on all our WCF socials, website, youtube & vimeo channels. Your submission will act as permission for White Coats Foundation to share your entry and republish on our social channels, website, and any associated collateral.
* The first 5 entries receive a $100 Gift Card. Gift Card gift valid for Australian entrants only.
Your Voice Your Story 2024 is sponsored by
International Clinical Trials Day - May 20th
20 May is International Clinical Trials Day. International Clinical Trials Day commemorates James Lind’s experiment with citrus fruits as one of the first reported clinical trials in medicine. Lind was able to provide evidence of the link between fruit and preventing scurvy. International Clinical Trials Day is celebrated around the world to raise awareness of the importance of clinical trials and research in healthcare.
Your Voice,Your Story Gallery 2021, 2022 & 2023
Access to Clinical Trials – A Choice or a Privilege? - Caitlin's story
This photo was taken in 2020. I had just discovered a recurrence of my stage 4 ovarian cancer and my husband and I were waiting to hear about an immunotherapy clinical trial.
This image generates many mixed emotions and memories for me – feelings of hope, uncertainty, and frustration around clinical trials, and of also being overwhelmed and vulnerable, emotions that always accompany any new treatment where the outcome is unknown. I was hopeful that it would work, as one hears great stories about trials, but I felt so powerless, small, and insignificant – like I was just another number (I was the last patient to be recruited in Australia). Healthcare can be so dehumanizing at times; it’s easy to forget to see the whole person behind their patient data. Unfortunately, this 2020 trial did not work, nor did subsequent chemotherapy. However, I was able to access another immunotherapy drug combo off label, which had worked in a different gynae cancer setting. This drug combo had no clinical trials open at the time that I was eligible for, which is the frustrating aspect of clinical trials – ELIGIBILITY and ACCESS!
Often the trials/drugs are there, but it isn’t easy to get connected to the right trial at the right time. I have a very rare form of ovarian cancer (clear cell pathology), so I am often excluded from clinical trials and PBS listed drugs which other, more common cancers (and often other types of ovarian cancer), get access to.
Without a trial, I had to pay up to $12,000 a month for these off-label drugs. A sound investment given that they kept my disease stable for 2.5 years and enabled me to witness many family milestones (including my eldest daughter turning double digits – a milestone I wasn’t sure that I would reach when this photo was taken!). I appreciate that extrapolation of previous clinical trial data enabled me to access these drugs off label, and for that I am extremely grateful. However, to be financially penalised and denied trial access due to the pathology of my disease seems unethical. And if I was not a scientist with a healthcare background, would I have been knowledgeable and confident enough to seek these off-label drugs?
Having lived with advanced cancer for over 6 years now, I have observed many barriers and issues pertaining to trials. Accessibility to clinical trials is dictated not only by the patient’s type of cancer, but also where they live, who their treating oncologist is (the Dr is the gatekeeper for all information regarding treatments and trials), and how empowered and informed the patient is about clinical trials. As we move to a more tumour agnostic treatment approach with genetic testing of both blood and tumour tissues, and thus more personalised treatments, we need to ensure that all cancer patients are offered such genetic testing. And these tests need to be provided in a timely manner with the support of a reliable, transparent, truly collaborative, and sophisticated clinical trial platform.
Clinical trials CAN extend, and even save, lives. I dream of a day where clinicians, pharma, patients, and advocates come together to find creative solutions to current trial accessibility issues, to ensure that no-one is left behind.
The Gift of Time and Hope - Sarah's story
This image captures a moment in time during my cancer journey. Time is the most precious commodity in my life: time with my family, time to care for my son, time with my family and friends, and time to live a full and happy life. My husband captured this moment of hope and smiles while I was in hospital. My treatment was working. I was juggling my rare cancer treatment, with the support of our son, my husband and my mum. Time and hope are the foundation of coping with my cancer. Clinical trials have gifted me both: time on this earth and hope for future treatments.
Helping answer the important questions to improve care in the NICU and beyond - Natalie's Story
This is a picture of my twin boys, who were born premature (28 wks 6 days).
Today, and thanks in part to clinical trials, the boys are happy, healthy and wild. The knowledge gained from past clinical trials helped inform the boys’ care in neonatal intensive care unit (NICU) and beyond.
As a NICU parent, clinical trials mean answering the important questions to help:
prevent or reduce the risk of at-risk pregnancies
improve the care for premature and sick babies in the NICU
improve outcomes for babies and their families after NICU.
Standard of Care - Liz's story
Just prior to Christmas 2022 I went for my normal gynae check-up. What I thought was a benign thing was cancer. Within days commenced radiation treatment.
It was not a clinical trial as Standard of Care. However, Standard of Care only becomes available to us as patients through clinical trials.
I work in clinical trials and so know a lot about medicines but here I am a patient – all your professional knowledge goes out the window as are on the other side. I was not going to let the big machine beat me.
Hope - Helen's story
Clinical Trials mean hope to me. They have give my dear friend extension of life and more time to make great memories together
A different future - Fiona's Story
Clinical Trials mean a different future to me.
This is an image of a painting I did a few years ago. I am a terrible painter, I do it as a kind of therapy. This time a rose emerged; it made me smile. I painted it during a time when I found out that my father was sick with kidney disease and how frustrated I was that there wasn’t any options bar two presented to him (dialysis or “disease management” ) – he was 80 when diagnosed as stage 4.
Recent years have seen me involved on the peripheral of the clinical trial sector. I’d like to think there will be in the future more options such as clinical trials for people to choose from as part of their treatment or even as an altruistic gesture. So yes, clinical trials for me, means a different future.
Lillian
When I ran out of treatment options for stage IV lung cancer, my daughter was only 3yrs old. Just like this sunrise sneaking under the dark clouds, a phase 1 clinical trial opened up and saved my life. I'm still here 7 years later.
Clinical research unexpectedly gave me more than a glimmer of hope, it gave my daughter time with her mother, and it gave me life.
Graham
Clinical trials meant that there was a chemo drug available as part of my brain cancer treatment.
Hopefully clinical trials will one day make more and better treatments available for this disease.
Gladys
Clinical trials indeed transform people's lives. Being a study nurse at CMAX, I can see further advancements in medicine through the help of clinical trials.
The symbols show how the collaboration between the participants and healthcare professionals makes the creative creation of medications, which then produces hope and a better life to a lot of people indeed.
Sarah
Participating in a Clinical Trial meant my daughters were able to grow up with a mother.
In 2006 I was diagnosed with a very rare form of cancer - acute promyelocytic leukaemia. I was told I had leukaemia at 2pm on a Friday afternoon, and had to decide by 4pm if I wanted to join a Clinical Trial that had changed survival rates from 5% to 80% in patients who had relapsed. As it was a single-arm trial, there was minimal down-side to my participation, and the hope of a cure. I had my first chemo that night.
My greatest fear was not dying itself, but that I would not be there for my daughters when they needed me.
The first photo is taken in the courtyard of the townhouse on ‘day release’ at the end of the induction phase, which I almost didn’t survive
The second photo was taken on Mother’s Day 2022 at my parents’ house in Sydney.
Due to a clinical trial, I have been able to guide and support my girls as they have grown up and blossomed into wonderful young women. I am privileged to have grey hair and wrinkles and to be a part of their lives.
A clinical trial saved my life, and gave my daughters back their mother.
The Gallipoli Medical Research Foundation
“Sharing our love of good study design through randomised brownie trial in our clinical trials community”
Sharing the importance of Clinical Trials to the development of new treatments to clinical trial team members from GMRF and the Greenslopes Private Hospital.
The process of randomisation was identified by the unknown selection of raspberry brownies versus standard brownies - blindfolded in the process.
Clinical Trials in Regional Victoria
This image is of the joining of two rivers, the Ovens and King in regional Victoria where we coordinate clinical trials. The joining of the rivers to me symbolizes not only our beautiful regional setting but the coming together of health care providers and our community to share in the common goal of improving health through research. It is important to highlight the opportunities for clinical trial involvement in regional settings as they continue to expand and develop.
Shyamsundar
“Diversity is more than skin deep” in clinical trials, especially when it comes to kidney disease and trials for people from indigenous and culturally, linguistically and diverse background.
Diversity should address the equality, equity and justice deficits”
Janelle
From the health consumer perspective, it recognises the hope that people have in clinical trials to bring themselves or future patient’s better outcomes. It also talks to their need for good information to help them find and properly weigh up whether or not to take part in a trial, sometimes when time is ticking. From the perspective of those involved in running clinical trials, it represents the known need for speed, good decision making and quality information to ensure they are approved, enrol, conducted properly and successfully deliver the outcomes that make a difference and bring hope to future patients.
skinhealth
Stephanie - BMS
Rainbow representing each patient that participates in a clinical trial. BMS Clinical Operations Staff from Australia, New Zealand, Singapore, India and Korea all stamped their fingerprint on a colourful sticky note. Each colour within the rainbow represents a different clinical trial so when each person is adding their fingerprint onto the sticky note it represents how each person who is involved in a clinical trial contributes to finding new treatment options. The colours that don’t reach the end represent clinical trials that are still ongoing and the importance of continuing clinical trials to increase the amount of treatment options available to patients. On the left site of the rainbow we will have a cloud with the word HOPE which represents patients who have a chronic condition or just been diagnosed. On the right side of the rainbow we will have a heart which represents the treatment options that become available for patients due to clinical trials and the patients that participated in those trials.
Angela - Victoria- Sunrise
Floriane - Victoria
"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."
Jessica - Qld
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
Janelle - NSW
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.
Jacqui - NSW
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.
Melanie - SA
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
Zoe - NSW
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.
Lee
‘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.’
Natalie -VIC
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
Melinda - NSW
"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?”
Sarah -ACT
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.
Deepti -VIC
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.
Stephanie - VIC
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.
Caitlin_NSW
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
YVYS Webinars
The White Coats Foundation selected storytellers for further presentation at the “Your Voice, Your Story” public webinars that were held on International Clinical Trials Day-20th of May since 2021.
The 2022 & 2023 webinars were co-facilitated by Elizabeth Wilson (Director of Prime and Partner Sites, IQVIA) and our 2021 webinar by Melinda Cruz Turner ( Founder of Easy Family Co & Miracle Babies Foundation Senior Research Officer at NHMRC CTC )
All our ICTD Your Voice Your Story webinars have been informative, inspirational and moving session. We were honored to bring together so many amazing people who shared very personal insights that will hopefully give others a voice.It is with much gratitude we thank our storytellers, this year and every year, for sharing their stories. For us, it is a privilege that you choose to do this at our event. You can see each webinar here .
Your Voice Your Story - The Webinar Recordings
2023 Webinar
Your Voice Your Story - The Webinar Recordings
2022 Webinar
The 2021 Webinar
Our 2021, 2022, 2023 & 2024 Sponsor
We would like to express our sincere gratitude and thanks to our sponsor for supporting this initiative.
Since “Your Voice Yours Story’s” inception, Boehringer Ingelheim has been part of the initiative. It’s their sponsorship that has enabled WCF to continue with this storytelling and enabled us to introduce a gift card for those who share their voice and story at our webinar on #ICTD every year.
Most importantly, Boehringer Ingelheim’s contribution makes it possible for us to continue to raise awareness of clinical trials and their role in healthcare.