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

Isabelle M. Sanchez, Lindsey Shankle, Marilyn T. Wan, Ladan Afifi, Jashin J. Wu, Frank Doris, Alisha Bridges, Marc Boas, Brian Lafoy, Sarah Truman, Ana Maria Orbai, Junko Takeshita, Joel M. Gelfand, April W. Armstrong, Michael P. Siegel, Wilson Liao

Research output: Contribution to journalArticlepeer-review

Abstract

Introduction: To design and implement a novel cloud-based digital platform that allows psoriatic patients and researchers to engage in the research process. Methods: Citizen 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. Results: As 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. Conclusion: With 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.

Original languageEnglish (US)
Pages (from-to)405-423
Number of pages19
JournalDermatology and Therapy
Volume8
Issue number3
DOIs
StatePublished - Sep 1 2018

Keywords

  • Clinical research
  • Digital
  • Internet
  • Online
  • Patient-reported outcomes
  • Portal
  • Psoriasis
  • Psoriatic arthritis
  • Quality of life
  • Symptoms

ASJC Scopus subject areas

  • Dermatology

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