Giants of science don’t come much bigger than Rosalind Franklin. Her catalytic role in unravelling the structure of DNA went scandalously unrecognized during her lifetime, but — as the inscription on her tombstone indicates — her research and discoveries on viruses are still benefiting humanity today. Those achievements bear out her most famous assertion: “Science and everyday life cannot and should not be separated.” Truer words have never been spoken. She’s a genuine heroine of science.
Last week, on World Cancer Day, I wrote an article celebrating advances in oncology, many of which appear to have Franklin’s philosophy deep in their DNA. Personalized medicines are transforming the way that cancer is treated — and they’re changing and saving lives in the process. These innovations are the epitome of science and life indelibly intertwined. After all, when a patient’s own cancer cells are used to trigger their immune systems and kill off their tumors, that’s science and life playing together in concert. Science giving life, and life giving science.
We cannot separate science from everyday life; everything is intrinsically connected. However, when it comes to our health, it’s not always easy to make the connection. That’s why, on the International Day of Women and Girls in Science, in addition to celebrating the remarkable women transforming scientific discovery, we should also recognize the everyday heroines who bring science to life and make it real for patients. For me, that means patient advocates.
Patient advocates have often experienced the sharpest edges where life meets science, and are better placed than anyone to communicate what it means in relatable terms. Their contribution to healthcare is unique but unsung.
In those crucial moments when time stands still as a health challenge throws us off course, advocates – usually patients or caregivers with real-world experience of a disease — can convey complex science in plain language that people understand. Often drawing on painful personal experiences, they make science meaningful for everyday audiences — bringing an authenticity to health conversations that informs, inspires and influences. They’re agents of change, fundamental to scientific discourse.
In a world where life and death decisions are sometimes clouded by jargon and confusion, patient advocates “bring science home” in ways that experts seldom can. They make it real.
Some of the most prominent advocates are women. For example, in the U.K., Deborah James — a former deputy head teacher who was diagnosed with stage 4 bowel cancer in 2016 — has become an inspiration and support for cancer sufferers everywhere. Now a writer and broadcaster — known affectionately as the Bowel Babe — James’ campaigning presents the “science of how to live with cancer.” She works tireless to spread positivity and awareness, talking about cancer in a way that’s hopeful yet realistic and unapologetically authentic. Her most recent updates relay the heartbreaking story of how she drifted in and out of consciousness to say goodbye to her children when doctors had told her she might not survive the night. That’s the ultimate collision of science and life.
But James’ campaigning hasn’t just focused on the human emotions of life with incurable cancer, it’s detailed the high science she’s experienced throughout her journey. Communicating the complexities in simple terms that bring science home. She’s transformed bowel cancer awareness.
Another eminent advocate is Sumaira Ahmed, a former model and actress who, in 2014, was diagnosed with sero-negative neuromyelitis optica spectrum disorder (NMOSD) — a rare, incurable autoimmune disease. Later that year, motivated by the dearth of information about the condition, she launched The Sumaira Foundation, a nonprofit designed to generate awareness, fundraise for research, patient advocacy and create communities of support to patients and their caregivers. Five years later — and four years after becoming the first Miss Bangladesh-USA — Ahmed was listed among the top nonprofit founders predicted to impact the world in 2020. She’s a one-woman campaign show, but her collaboration with partners from across the disease community — and her incredible communication across multiple platforms — is helping to make science meaningful for the global NMO community. Her work is giving voice to NMOSD/MOG-AD, inspiring patients and caregivers all over the world to share their stories. It’s science meeting life — and giving it a human face.
The role and influence of advocacy in healthcare is growing rapidly. It’s a broad church, encompassing everything from patient associations — large and small — to individual campaigners with nothing more than a smartphone, a TikTok account and a huge dollop of determination. The work they do makes a huge contribution, providing a valuable bridge between science and everyday life.
In my own business — a global health communications practice — the inseparability of science and life is core to our purpose. Science is the cornerstone of everything we do. But we know that if we want to improve health outcomes, we must connect that science to people, culture, community and humanity, and speak in ways that make science real. If communications don’t make that connection — and make science meaningful — they’ll struggle to inspire the human behaviors that lead to better health.
That’s why at VMLY&R Health we’re passionate advocates for Connected Health that translates complex science into the everyday language of life. And it’s why, on the International Day of Women and Girls in Science, we believe the amazing work of advocates such as James and Ahmed — and thousands of other women just like them — should be recognized and celebrated. They make a profound difference to patient care. And just like Rosalind Franklin, they’re genuine heroines of science — making a different difference.