Defending the rights of patients and representing them is a job. Like that of a researcher. He gives an example Patricia A. Spears, scientist in the field of microbiology and immunology, research manager and, at the same time, patient advocate at the Lineberger Comprehensive Cancer Center of the University of North Carolina (UNC) – Chapel Hill, where she leads the UNC Lineberger Patient Advocates for Research Council and the UNC Breast SPORE Advocates. And she does a lot more. A series of titles, experiences and milestones that explain why Spears will receive the Patient Advocate in a few hours Award at the Asco 2022 congress, the award for those who fight to defend the rights of the sick.
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A career as an advocate
Her ‘career’ as an advocate began over 20 years ago when she fell ill with breast cancer. However, advocacy is a propensity that could be called ‘genetic’. Her father was also an advocate for the blind, and already in the 1980s, before her illness, she volunteered to support people with HIV / AIDS. Her cancer diagnosis came in 1999, at the age of 40: she wanted to connect with other women with her own disease, but obviously online support groups weren’t as easy to find as they are today. . A woman who volunteered with the Komen Race for the Cure had helped her.
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The “environmental issue”
Her first speech as an advocate focused on a very topical issue: the role of environmental factors in the onset of cancer. “I didn’t have much experience with public speaking, but I found I liked it,” she tells Spears on Asco Daily News. “That speech led to my first publication on breast cancer and further involvement with Susan G. Komen. Above all, though, it made me discover my calling and my passion.”
Not only. For her – she says – environmental factors were a personal matter, because her family had been deeply affected by cancer: in addition to her, her parents and her sister were also ill: “We were a military family – she explains – and we had lived in many different bases, both in the United States and in other countries. We always wondered if we were exposed to environmental risks in some of these places, but we will never know for sure. ”
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The role of patients in clinical trials
The experience gained as a researcher in data management and analysis, however, served her in the second phase of her career, which began in 2017: the year she joined the University of North Carolina. It was from this moment that Spears began to understand the importance of involving patients also in the design of clinical trials.
Currently, patients are being integrated into the research programs of the UNC Lineberger Comprehensive Cancer Center: “Their input is being requested more and more frequently. I am also referring to participation in funding review committees,” he says. What is their contribution? One above all, to push for research that meets their real needs more.
Something is changing (for the better)
Spears is now also a member of the ASCO Breast Cancer Guideline Advisory Group. Furthermore, since 2008, she has been part of the National Clinical Trials Network. The pandemic – she points out – has helped change the way clinical trials are conducted, often making it easier for patients to participate. For example, experimental oral medications are now being shipped to patients, who can take virtual visits or go to a clinic or laboratory near their home for testing.
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“The restrictions on telemedicine have been loosened, but that will not be the case forever. Making these changes permanent will involve decisions at the political level. That said, it is clear that clinical trials have been safer and more patient-centered during this period, a fact. that must be taken into account “.
Over the years, the awareness of patients has also increased: “Although many challenges remain – concludes Spears – today the voices of patients are heard”.
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