Building a Citizen Pscientist: Advancing Patient-Centered Psoriasis Research by Empowering Patients as Contributors and Analysts

Abstract

IntroductionTo design and implement a novel cloud-based digital platform that allows psoriatic patients and researchers to engage in the research process.MethodsCitizen Pscientist (CP) was created by the National Psoriasis Foundation (NPF) to support and educate the global psoriatic disease community, where patients and researchers have the ability to analyze data. Psoriatic patients were invited to enroll in CP and contribute health data to a cloud database by responding to a 59-question online survey. They were then invited to perform their own analyses of the data using built-in visualization tools allowing for the creation of “discovery charts.” These charts were posted on the CP website allowing for further discussion.ResultsAs of May 2017, 3534 patients have enrolled in CP and have collectively contributed over 200,000 data points on their health status. Patients posted 70 discovery charts, generating 209 discussion comments.ConclusionWith the growing influence of the internet and technology in society, medical research can be enhanced by crowdsourcing and online patient portals. Patient discovery charts focused on the topics of psoriatic disease demographics, clinical features, environmental triggers, and quality of life. Patients noted that the CP platform adds to their well-being and allows them to express what research questions matter most to them in a direct and quantifiable way. The implementation of CP is a successful and novel method of allowing patients to engage in research. Thus, CP is an important tool to promote patient-centered psoriatic disease research.

What Practitioners Need to Know

“…A study published in Dermatologic Therapy by Isabelle Sanchez and colleagues 1 described the National Psoriasis Foundation’s Citizen Pscientist platform. The study describes the Citizen Pscientist database which at the time of submission included data from 3534 participants and illustrates the interest of patients in participating and influencing research.…”

Clinical Characteristics of 18 Patients with Psoriasis and Multiple Myeloma Identified Through Digital Health Crowdsourcing

“…However, online crowdsourcing platforms have become innovative tools that can empower and actively engage patients in the research process by enabling the contribution of health data, ideas, and observations. Platforms such as CureTogether and Citizen Pscientist have enrolled thousands of patients to generate de-identified patient data for clinical study [ 1 ]. The recently launched HealthTree ® platform, an online ecosystem that helps multiple myeloma patients find their best myeloma treatments and accelerate research toward a cure, has registered > 6000 patients, many of whom have uploaded verified medical records and genetic profiles [ 2 ].…”