Clinical Edge

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Citizen Pscientist: Important New Research Tool

Dermatol Ther (Heidelb); ePub 2018 Jun 6; Sanchez, et al

Citizen Pscientist (CP), a novel, cloud-based digital platform that allows psoriatic patients and researchers to engage in the research process, was created by the National Psoriasis Foundation (NPF) to support and educate the global psoriatic disease community. 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. Investigators found:

  • As of May 2017, 3,534 patients have enrolled in CP and have collectively contributed >200,000 data points on their health status.
  • Patients posted 70 discovery charts, generating 209 discussion comments.
  • 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.
Citation:

Sanchez IM, Shankle L, Wan MT, et al. Building a Citizen Pscientist: Advancing patient-centered psoriasis research by empowering patients as contributors and analysts. [Published online ahead of print June 6, 2018]. Dermatol Ther (Heidelb). doi:10.1007/s13555-018-0242-5.

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