Citizen Pscientist: Engaging Patients in Data Analysis

Background: Psoriasis affects approximately 2% of all people in the United States, or approximately 7.5 million Americans. Direct medical expenses for psoriasis in 2012 were estimated at $5.17 billion. Psoriasis is associated with an elevated risk for other serious, chronic and life-threatening conditions, including psoriatic arthritis, depression, inflammatory bowel disease (IBD), obesity, cardiovascular disease, diabetes, stroke and cancer. Many treatments for psoriasis also work for rheumatoid arthritis, IBD, psoriatic arthritis and other inflammatory disorders. Results from psoriasis research are thus likely to benefit those with other diseases.

Program background: In August 2013, the National Psoriasis Foundation brought together a group of 4,099 psoriasis patients to participate in an experimental crowdsourced research project known as "Citizen Pscientist." This project allowed patients to begin exploring the idea of a web-based, patient-driven research community. Patients contributed by providing data about their disease, submitting potential research questions and analyzing the resulting data. The goal of the project was to explore methods for encouraging patients to contribute their own disease-related data and also engage with research in a more in depth manner by proposing questions for further investigation, exploring the data submitted by the group and creating visualizations with the tools available in the community. At present, the project is expanding with funding from the Patient Centered Outcomes Research Institute (PCORI) and support from patients. 

Evaluation Methods and Results: Survey -- In August 2013, 50,158 subscribers to National Psoriasis Foundation email lists were invited to participate in the online community. 4,099 responded, answering an online survey of 15 questions related to their disease. During the month of August, 73 of the 4,099 survey participants submitted suggestions for additional survey questions through the online community and 61 submitted visualizations based upon the summarized data available to them. Patient Focus Group -- Following the initial phase of the project, a patient advisory group was formed to explore ideas for increasing activity and engagement amongst the online community users. The focus group was made up of 6 patients who met by teleconference. Patients discussed a variety of ideas for improving engagement including additional educational tools within the online community, gamification methods (for example, points systems or positive feedback mechanisms for participation), real-world rewards (such as coupons) for engagement and reminders to participants in the form of text messages and email alerts. Some of these ideas will be tested as the project continues into its next phase. Patients also suggested changes to the survey.

Conclusions: Psoriasis patients show significant interest in actively participating in research through a patient-driven online community. However, any such online community must provide educational tools and motivational mechanisms to keep participants engaged. Further incorporating gamification techniques and in-community feedback could improve participation in the higher engagement activities: proposing research questions and analyzing data with visualization tools. 

Implications for research and/or practice: Crowdsourced research projects create exciting opportunities to open communication between patients and researchers. Although patients are intrinsically motivated to participate, researchers should carefully consider the feedback and communication that participants receive in order to ensure that projects are as successful as possible.