patients’ lived experience: a valuable disease expert voice

back in 2020, livia ujj, a long-time registered nurse in windsor, ont., was accompanying her uncle to an appointment at the hospital on a thursday when she shared with him that she was having a bit of pain herself. by friday night, the pain had become so severe that she was in tears – and by saturday morning had decided to see a doctor, who ordered a cat scan.   

a 15-centimetre tumor was discovered and in rapid succession the then-48-year-old was diagnosed with an advanced form of ovarian cancer. she had surgery and immediately embarked on the first of six rounds of chemotherapy.   

“i really felt so alone,” ujj recalls. ovarian cancer is the fifth most common cause of cancer-related death among women, with 3,000 canadian women diagnosed each year. only 45 per cent will outlive the disease for more than five years.  

“it took browsing online and coming across ovarian cancer canada to find my empowerment and a kind of support my loved ones simply couldn’t give me,” ujj says. “i quickly realized i wasn’t alone. it was an amazing relief to find a community of voices with lived experience with the disease.”  

she found one resource on the site particularly valuable during treatment. “they have a discussion board where women can ask questions and get answers from others who have had ovarian cancer,” ujj explains. “you start to say, wow, i’m not the only person who has this symptom. or you learn that you can ask about a specific medicine that helped someone else.”  

ujj’s shared that her treatment was gruelling. a photo she and her husband took on new year’s eve after he shaved his head to match hers was “one of the last smiles” she remembers during chemo as her treatment side effects grew much worse. once she completed her treatment plan and doctors declared she had “no evidence of disease,” ujj felt compelled to give back to the ovarian cancer community, despite lingering pain from nerve damage.   

“today, i’m a patient partner with ovarian cancer canada,” she says. “our lived experiences and emotional journeys are not just ours; they are heard and carried by the staff at ovarian cancer canada and integrated into every step, every decision, every dollar spent.”   

similarly, one of ovarian cancer canada’s major initiatives—the patient partners in research program—brings together scientists, and people with lived experience to enhance the quality of ovarian cancer research. “by sharing our experience from the beginning, we can help shape research projects around what is important to women who are living with ovarian cancer, and their care partners,” ujj explains.  

“these women are the true experts in the disease—they have very personal expertise,” says hélène pineau, national director, patient affairs and advocacy at gsk canada, one of ovarian cancer canada’s partners. part of her team’s role is to engage with patients and patient organizations to foster collaboration and synergistic partnerships. “this cooperation is crucial in helping us be even better at what we do,” pineau says.  

hélène pineau, national director, patient affairs and advocacy at gsk canada supplied

collaborating on research goals is just one of multiple ways in which the biopharma company puts patients at the centre of everything they do. “our work is not just about the medication or even the innovation we bring to patients—it’s about trying to understand what women living with ovarian cancer are going through and the challenges that matter to them.”  

“we engage individually with patients, to try and gain perspective, and share these unique insights with internal teams. these relationships we build and nurture are based on trust, respect and integrity,” pineau adds. “it’s important to gain a holistic sense of the experience women have while living with the disease; understanding the patients’ experience at a human level, the role of the caregivers, and what is troubling them — the impact the disease has on their life, whether it’s at work, outside of work, in family, or healthcare.”  

one such relationship reveals what pineau says is the company’s ambition for patients. “a very important insight we received a few years ago from a woman living with ovarian cancer, is that what we do at gsk is not just another day at work. we’re giving every woman with ovarian cancer a fighting chance at life. what she meant was, don’t underestimate your contribution—everything you do is impactful. we keep this in mind on a daily basis. it is part of gsk’s purpose.”  

patient partners such as livia can help ovarian cancer canada pinpoint gaps in patient needs that industry can potentially help fill—such as a complementing support during the monitoring phase following treatment. “one of the learnings we can act on is to alleviate how much women feel alone and lost,” pineau says.   

livia ujj and her husband supplied

patients, patient organizations, government, researchers, healthcare professionals and industry, “all need to come together and pull in the same direction to optimize the access, treatment, experience, and ultimately, the life and survival of people living with ovarian cancer,” pineau emphasizes.  

and ujj is committed to continue participating in that effort. “i put my energy into being a part of this change,” she says. “i’m here for a reason. i never thought ovarian cancer was going to be part of my purpose, but i’m here to fight for the women we’ve lost who don’t have a voice anymore.”  

this story was created by content works , healthing’s commercial content division, on behalf of gsk

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patients’ lived experience: a valuable disease expert voice

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