The National Psoriasis Foundation (NPF) launched Citizen Pscientist in 2015 with high hopes. For decades, NPF has helped scientists in their search for a cure and patients in their search for a community.
In Citizen Pscientist, NPF combined the two. Anyone can become a Citizen Pscientist. Here’s how it works: You anonymously answer survey questions that ask about triggers, treatments, comorbidities, lifestyle and disease severity. Once you’ve completed the survey, you share your data, which enables you to explore and analyze everyone else’s data. You can discover patterns, ask questions, leave comments and dream up your own theories.
“I got involved because I thought Citizen Pscientist was such a neat and important idea to get patients involved in the research process,” says NPF medical board member Wilson Liao, M.D. Liao is one of the seven doctors and researchers on the Citizen Pscientist Governance Committee and a professor of dermatology at the University of California, San Francisco.
Historically, patients participated in research as, well, patients. Meanwhile scientists analyzed the data. “Only researchers could do this, until now,” Liao says. “[With Citizen Pscientist,] patients can take any two variables, such as psoriasis and smoking, and see the relationship between the two.”
But Citizen Pscientist is not just a playground for people living with psoriatic disease. Researchers are using this data right now, which means participants are contributing directly to the work of finding a cure.
You never know where volunteering will take you
When they volunteered to help with Citizen Pscientist back in 2015, the five patient members of the Governance Committee – Marc Boas, Alisha Bridges, Frank Doris, Brian LaFoy and Sarah Truman – became trailblazers in psoriatic disease research.
What they couldn’t have predicted is that three years later they would be co-authors of a scientific paper: “Building a Citizen Pscientist: Advancing Patient-Centered Psoriasis Research by Empowering Patients as Contributors and Analysts,” published in Dermatology and Therapy in June.
“I got involved because it was just one more way I could try and make a difference in the battle to find a cure,” says LaFoy, of Plano, Texas.
LaFoy wanted to help. Doris, of East Northport, Long Island, wanted to be a scientist. “Being the geek that I am, I’ve always been interested in the science [of psoriasis],” says Doris, of East Northport, New York. “Citizen Pscientist gives me the chance to be a participant rather than just reading about it.”
Scientists enjoy collaborating with patients
“Building a Citizen Pscientist” summarizes the program’s first three years, in which membership rose from 1,870 after three months to 5,332 in July 2018. Eight hundred Citizen Pscientists visit the site every month, many more than once. Together, these pioneers have answered 227,832 survey questions.
“I really appreciate the patients’ willingness and their level of enthusiasm,” Liao says. “Just look at the number of sign-ups and the number of ideas these patients have contributed.”
Among the many findings in “Building a Citizen Pscientist,” these topics were cited as the most important to patients:
- Comparing the effectiveness, safety, risk and costs of various treatments
- Diet or natural remedies
- Management strategies, such as Treat to Target, comparisons of home versus office-based phototherapy, and differences between scalp psoriasis treatments
These are insights that scientists toiling away in a lab might never have gained without Citizen Pscientist.
Empowerment to the people
The paper emphasizes the “psychosocial” as well as the physical symptoms of psoriatic disease. “Patients often benefit from sharing their experiences with a community of psoriatic patients,” the paper states. “Patients noted that the platform adds to their well-being and allows them to express what research questions matter most to them in a direct and quantifiable way.”
Citizen Pscientist, LaFoy says, “is a help to me in the sense that I get validation from what others are experiencing and trying themselves, though I think I use it more as a platform and opportunity to help others through my input.”
Driving discovery, creating community
For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.