Alicia Staley remembers her mother sitting at the dining room table, poring over the pages of a thick binder filled with details about a clinical trial for Hodgkin’s lymphoma. She was trying to decide whether it was the right choice for her daughter, who was diagnosed with the disease at age 19.
“Both of my parents are highly educated individuals, dual master’s degree-type parents,” Staley says. “And I remember her saying, ‘I can't figure this out. I don't know if this is a good idea for you.’ I remember thinking, if my mom can't figure this out, what's happening to people that don't have parents that can get through this? There was just something about it that really stuck with me.”
Staley ultimately passed on the trial. But that moment — and others that followed during her treatment for three different bouts with cancer — did succeed in moving her toward a career path she never expected to follow. Now, the vice president of patient engagement for Medidata, a New York City-based company that develops and markets clinical trials software, Staley is helping to bring the patient perspective into product development to improve the experience for people with cancer.
“I felt, I’ve got a voice, I've got an idea of how we can make this better. I've made this leap into this industry, thinking that if my patient experience can't help make the system better than nobody's can,” she says. “And it also helps me make sense of what I’ve had to go through my entire life.”
Down to earth
Staley initially set her sights on becoming an astronaut when she enrolled in the aerospace engineering program at Syracuse University after high school. But in her sophomore year, plans abruptly changed when a nasty and oddly persistent cold led to a diagnosis of Hodgkin’s lymphoma, a cancer of the lymphatic system.
“I stayed in school, but also started going through chemotherapy, radiation, and a number of surgeries,” Staley says.
To ease her course load, she switched from aerospace engineering to mechanical engineering. After three years of cancer treatment, life seemed to go back to normal. She graduated and settled into her career, eventually rising to the level of senior product analyst/information systems analyst, overseeing a team of product developers and engineers in the financial services industry.
Then came her second major setback — a 2004 breast cancer diagnosis, likely caused by her cancer treatments 10 years earlier. Luckily, it was caught early due to routine surveillance by her cancer center. But it was followed by a second breast cancer diagnosis in 2008.
In 2004, thanks to the internet, the cancer world was dramatically different from the one she remembered as a teenager. Staley, looking for any information she could find, was eager to log on.
“Support groups weren’t really a good fit for me,” says Staley, who was younger than a lot of the other patients she encountered and her case was unique. Then, a friend introduced her to an emerging social media platform.
“Twitter was fairly new at that time. It had started only about a year before,” she says. “But I got on there and I was blown away. People were putting things like cancer survivor in their profile and it just made it so easy to find other people who were cancer survivors.”
No longer as isolated as she was after her Hodgkin’s diagnosis, Staley was able to connect with others going through similar experiences — and discover how much reach those connections could have.
“I got together with another breast cancer survivor and we came up with the idea to build a hashtag community as a way to find more breast cancer survivors. We used the notation #BCSM for breast cancer social media,” Staley says.
Other groups followed suit and today there are more than 125 branded cancer hashtag communities in existence, she says.
Putting the pieces together
The patient support network she helped build for herself and her patient advocacy work led to consulting opportunities that eventually began to overshadow her day job. She decided to embrace the opportunity and pivoted away from financial services. Her career change has successfully married her two worlds — patient advocacy and software design and information systems management.
In her current role, she’s most proud of work she’s done with her team and the support of leadership, to help engage patients in the design process. Staley developed and now manages a proprietary methodology called “Patient Centricity by Design,” which provides a structured process to integrate patient input into the software development process.
“Patient centricity by design is a methodology that we use at Medidata that allows us to take what I know from software development and formalizes the patient perspective,” she says.
For example, if the team is developing an electronic consent tool, they include touchpoints with patients along the way to get feedback and make adjustments to help create a final product that’s clear and easy to navigate.
“We might be the first company that's doing that, and that's wonderful, but I hope at some point in the future, every company that's developing a tool for use in life sciences uses that rigor and touch points with patient communities,” Staley says.
According to Staley, companies often build an application and roll it out without consulting the users.
“And it's so far off the mark sometimes. I look at some of the applications that are out there and it’s clear that no one ever stopped to think, where does this fit into the day-to-day experience for a patient dealing with cancer, or a patient with a chronic disease that might need a clinical trial?” Staley says.
The industry goal, she says, should be to make clinical research participation easier and more accessible to patients.
“I would love to see patient insights more formally recognized in trial development and drug development overall,” Staley says. “I think we're making wonderful strides with what we're doing today. But I know that we can take that even further. And I think, maybe being so bold as to say that at some point in the future that you can't run a trial without having patient involvement from day one,” she says.
The FDA has a growing interest in promoting the patient perspective in clinical research, she says.
“I imagine at some point, we're going to have those roles more formally defined and integrated in the entire lifecycle,” Staley adds.
Staley says that her ultimate goal is to help the industry do a better job at honoring the patient journey in clinical research by building better experiences from day one.
“They need to make sure that when somebody is either diagnosed with cancer, or a chronic condition, or is experiencing something where they don’t have an answer to their questions, that the industry can rise up and support that person as if they were the only one in the world dealing with that experience,” Staley says.
