“It can’t wait until tomorrow”: How patient advocacy drives change

At Illumina, patient advocacy is more than a department—it’s a mission. Driven by empathy, expertise, and a commitment to making a difference, the Patient Advocacy team, comprised of Shirlene Badger, Cody Barnett, and Sergio Diaz, brings together diverse backgrounds and a shared passion for helping patients and families navigate the complex world of genomics.

“No one grows up thinking, ‘I want to be a patient advocate,’” says Badger. “It’s not that sort of career decision; it’s something that almost gets thrust upon you. It becomes a necessity. We work with many people for whom the urgency of access is a matter of life and death. It’s not something that can wait until tomorrow.”

The Illumina team members come from varied backgrounds. Badger began her studies in classical piano before earning one of the first Wellcome Trust PhDs to explore how receiving a genetic diagnosis for extreme obesity helps people make informed decisions. Barnett, who lives in Washington, D.C., spent seven years at the Melanoma Research Alliance, leading patient engagement and communications. Diaz joined Illumina after founding the patient advocacy team at IQVIA. Both Diaz and Badger live in the UK.

“There’s no agreed-upon definition of what patient advocacy means in the industry,” notes Diaz. In his experience, sometimes patient advocates have to define their roles to their own company—he remembers having to reiterate that his job was not to recruit patients for trials or studies. But one throughline is: They try to make things better for patients. Badger frequently describes patient advocates as implementation scientists. “Together, we understand the complexity of the ecosystem and how we need to connect philanthropists with technologists, decision-makers with key opinion leaders, and citizens with what is possible. This requires deep collaboration across different expertise in order to create better outcomes.”

The history of patient advocacy at Illumina
Illumina’s patient advocacy team formed in 2017. At the beginning, the work was focused mainly on storytelling, from a patient’s perspective: What is the narrative about the value of genomics? How do we help patients tell their story in an impactful way?

Badger recalls one family from those early days: The parents had always known their son had a medical issue, but couldn’t put a name to it. When they finally received a diagnosis, the mother called Badger to say, “You were right—he’s exactly who he’s supposed to be.” The family had a concrete explanation for their son’s difficulties, a gene variant in chromosome 2, which made a huge difference in their outlook and ability to make informed decisions going forward.

As the team grew, they began to draw upon patient stories to create evidence for the value of genomics across Illumina’s clinical segments. For example, in oncology, biomarker testing identifies actionable mutations in tumors, giving patients and their doctors critical insight when making treatment selections or considering clinical trials. The advocacy community at large is moving in this direction too, building the case that access to genomics is a human right. They’re seeing bills of rights coming out from the World Health resolution. For example, in May 2025, the 78th World Health Assembly adopted a landmark resolution, at the urging of patient advocates, making undiagnosed and rare diseases a global public health priority. It calls for a 10-year global action plan that includes timely and equitable access to diagnosis implementing best practices to leverage genomic medicine worldwide.

Who does the patient advocacy team at Illumina work with?
The Illumina team builds relationships with patient advocacy groups to increase awareness and access to genomics. Patient advocacy groups serve as the “North Star” in their communities, educating patients and families about new developments, guiding policy, bringing attention to unmet needs, and spurring what is possible in technological implementation. “Patient advocates are often the ones who are out in front, in terms of what we at Illumina believe are the possibilities of genomics, because they’re living with the conditions day to day,” says Badger.

Patient advocacy groups provide support to individuals and families in many ways—helping them manage and navigate a diagnosis, select treatment options, and learn to live with the reality of a complex or chronic condition. Illumina’s team works to show how genomics provides precise information people can use to make informed health decisions. The team recently held the first Genomics in Oncology Leaders’ (GOAL) Summit, where US patient advocacy leaders learned about the current and expanding use of genomics in cancer, discussed challenges in accessing genetic testing, and shared best practices for overcoming them.

For many groups, “they just know that genomics is at the forefront of whether they live or die,” Badger says. “This is what opens possibilities in terms of clinical trials, treatments, and all of the knowledge that is needed to accurately give those families the best opportunity for survival.”

Barnett notes that the groups they work with are often the ones pushing the hardest for change, especially from his vantage point in Washington, D.C. He says that organizations regularly visit Capitol Hill and statehouses across the country to meet with their representatives and their staff, helping them understand the unique needs of their community, including the importance of access to genomics. “Historically, patient advocacy groups are the ones who’ve rejected the status quo over and over again, and demanded that the system change to better meet their needs,” Barnett says.

Badger agrees, emphasizing that this same spirit is foundational to their team: “In all the countries that we work, we see what is possible and say, ‘We can do better. We must do better, and we can be served better.’ And that’s where it’s really powerful for us.” She loves doing this job at Illumina because, “the power of genomics to transform lives is never more tangible than in those moments of both the individual and collective narrative to create change for communities.” This impact is especially clear when patient advocates help open new possibilities—like expanded access to newborn screening or rare disease diagnosis—where genomics directly changes outcomes for families and communities.

Advocacy is a long-term investment
Diaz stresses that none of this work produces immediate results. “You’re talking about building long-term plans to change health care systems. There are few quick wins; it’s a long-term investment.” As often as the team looks to the future, they also remind one another to look back at what they have accomplished. Projects that were distant dreams years ago come to fruition, and the team’s long-term efforts have enabled organizations to make greater progress than imagined.

Patient advocacy reflects a common disconnect: we tend to overestimate what can happen in the short term and underestimate what can happen in the long term. “Sometimes the fastest way isn’t necessarily the best way,” Barnett says, “It takes a long time for various stakeholders who don’t always see things the same way to come together—but it’s that coalition-building work that actually makes things stick.”