The initiative, been sponsored by Mural Health, tells the stories of the people who make clinical trials possible and those that support them.
Each story is intended to educate through unfiltered storytelling of personal health journeys and sharing industry victories to provide insights into their experience of clinical trials.
Sam Whitaker co-founder and co-CEO at Mural Health said: “The Portrait Project has been created because clinical trials are not well understood by the general public and the people who participate are often stereotyped unfairly.
“Unfortunately, I have also observed these gaps in understanding and stereotyping among my colleagues, the people who should be most in touch with the realities of clinical research. The Portrait Project shares the stories of patients and caregivers so the world, and my colleagues, can get in touch with who these people actually are, why they are involved, and the impact on their caregivers.”
A lot of the news that reaches the public often focuses on scientific breakthroughs from clinical research, but behind every success story are thousands of people, often critically ill and searching for a miracle, trialling new therapies and their effectiveness.
Mural Health says the project aims to highlight why people have enrolled and how the trials affect them and their loved ones. The company says The Portrait Project ‘serves to share these often-overlooked narratives, increase awareness, dispel misconceptions and reduce stigma’. It aims to create a community that collectively uses its voice to influence positive change throughout the clinical research ecosystem.
Stories from the Portrait Project cover a wide range of experiences, from cancer survivors who want to share their story in a bid to alleviate any fears newly diagnosed patients may have, to caregivers that emotionally recount their journey that ends in the death of a loved one.
Mural Health says stories have been that highlight how clinical research profoundly changes lives for the better. Other stories will be critical of the clinical research industry’s imperfections, recounting moments of sadness, loss, and personal devastation.
One contributor to the project, is Jessi Dobos Marsh who was diagnosed with colon cancer at the age of 35.
She said: “If you’re fortunate enough to survive, what you say has more weight to it. I knew I wanted to use that currency for good. And if I could make the experience less scary for someone, I was willing to be the cancer girl.”
As part of the project, storytellers can be seen to offer tips for caregivers which the company believes positively attempts to help others better navigate complex clinical environments while also managing the immense emotional toll charged to patients and their friends and families.