Credit: Thinkstock Have you ever wondered how psoriasis affects other people (their sex lives, for example), what triggers others have experienced, or how ethnicity is related to the disease? You’re in luck, as the National Psoriasis Foundation is now offering a unique voice to the psoriasis community through an initiative called Citizen Pscientist.
The NPF describes a Citizen Pscientist as “a volunteer who partners with the National Psoriasis Foundation to answer real-world questions about psoriasis and psoriatic arthritis.” The online interactive platform is pretty simple: at your own leisure you answer a serious of 42 questions (you don’t have to answer them all at one time). As you complete the survey, you will be able to compare and discuss your data with others in the psoriasis community. You can create your own graphs, start discussions, and discover similarities and differences with the condition.
I had a chance to chat with Lindsey Shankle, the Patient Center Manager of the NPF, who reveals why patient involvement in research is imperative and beneficial to the psoriasis community.
A sense of community
Support groups are critical when dealing with a disease. The Citizen Pscientist initiative provides another, clinical way for those with the illness to connect with others who have the condition.
“People will be virtually in touch with others who are experiencing similar things and [who know] what it’s like living with psoriatic disease,” Lindsey says. The latest report on the program’s initiative shows that a total of 73,969 questions have been answered by users, so there is a lot to be discussed. Recent discussions center on issues like body coverage in tobacco users and the worst triggers based on the season of the year.
Your voice will inspire research
Lindsey notes that researchers and doctors can come to the website to look at data, form hypotheses and engage in the discussions. This is a unique way for patients to have direct access and influence on researchers. At times, it can seem like people in the medical world miss the mark on what’s important to patients. This platform gives patients a voice to state what’s important and what’s needed for better treatment, broader access to care and more helpful maintenance care.
Using the info offline
“People with psoriasis can gain information for themselves that they can take back to their own doctor,” says Lindsey. Those with psoriasis can take the information discussed on the platform to help make more informed decisions on the state of their own health. A person might decide to talk about new treatment options, holistic approaches, or disease management.
Thus far the outcomes for the program have been positive. The NPF was awarded a grant from Patient-Centered Outcomes Research Institute, a non-profit designed to address questions and concerns around different disease states. Since Citizen Pscientist’s debut in 2015, only about 1,900 people have signed up. The NPF urges all who are affected by the disease directly, as a caregiver, or as a family member to sign up and complete the survey. The committee of the survey continues to create new topics and questions for the site, so stay tuned.
To get started as a Citizen Pscientist, go to their websit welcome page.
Alisha Bridges has battled with severe psoriasis for over 20 years and is the face behind Being Me in My Own Skin, a blog which highlights her life with psoriasis. Her goals are to create empathy and compassion for those who are least understood, through transparency of self, patient advocacy, and healthcare. She is currently a post-bach student at Georgia State University pursuing a career as a Physician’s Assistance—her passions are dermatology and sexual health. Alisha also shares her passion as a Social Ambassador of the Psoriasis HealthCentral Facebook page where she shares timely tips, stories and insights on living with psoriasis. You can also find Alisha on Twitter.