Sanchez Isabelle M, Shankle Lindsey, Wan Marilyn T, Afifi Ladan, Wu Jashin J, Doris Frank, Bridges Alisha, Boas Marc, Lafoy Brian, Truman Sarah, Orbai Ana-Maria, Takeshita Junko, Gelfand Joel M, Armstrong April W, Siegel Michael P, Liao Wilson
Department of Dermatology, University of California San Francisco, San Francisco, USA.
National Psoriasis Foundation, Portland, USA.
Dermatol Ther (Heidelb). 2018 Sep;8(3):405-423. doi: 10.1007/s13555-018-0242-5. Epub 2018 Jun 6.
To design and implement a novel cloud-based digital platform that allows psoriatic patients and researchers to engage in the research process.
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.
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.
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.
设计并实施一个基于云的新型数字平台，使银屑病患者和研究人员能够参与研究过程。
美国国家银屑病基金会（NPF）创建了“公民科学家”（CP）项目，以支持和教育全球银屑病患者群体，患者和研究人员在此能够分析数据。邀请银屑病患者加入CP项目，并通过回答一份包含59个问题的在线调查问卷，将健康数据贡献至云数据库。随后，邀请他们使用内置的可视化工具对数据进行自主分析，从而创建“发现图表”。这些图表发布在CP网站上，以供进一步讨论。
截至2017年5月，已有3534名患者加入CP项目，他们总共提供了超过20万个关于自身健康状况的数据点。患者发布了70份发现图表，引发了209条讨论评论。
随着互联网和技术在社会中的影响力不断增强，通过众包和在线患者门户可以加强医学研究。患者发现图表聚焦于银屑病疾病人口统计学、临床特征、环境诱因和生活质量等主题。患者指出，CP平台增进了他们的幸福感，并使他们能够以直接且可量化的方式表达对他们而言最重要的研究问题。CP项目的实施是让患者参与研究的一种成功且新颖的方法。因此，CP是促进以患者为中心的银屑病研究的重要工具。
