Building a Citizen Pscientist: Advancing Patient-Centered Psoriasis Research by Empowering Patients as Contributors and Analysts
| العنوان: | Building a Citizen Pscientist: Advancing Patient-Centered Psoriasis Research by Empowering Patients as Contributors and Analysts |
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| المؤلفون: | Jashin J. Wu, Frank Doris, Marc Boas, Wilson Liao, Ladan Afifi, Junko Takeshita, Joel M. Gelfand, Brian Lafoy, Ana Maria Orbai, Lindsey Shankle, Alisha Bridges, Isabelle M. Sanchez, Marilyn T. Wan, April W. Armstrong, Michael P. Siegel, Sarah Truman |
| المصدر: | Dermatology and Therapy Dermatology and therapy, vol 8, iss 3 |
| بيانات النشر: | Springer Science and Business Media LLC, 2018. |
| سنة النشر: | 2018 |
| مصطلحات موضوعية: | Quality of life, Clinical Sciences, Cloud computing, Dermatology, Digital, Crowdsourcing, Clinical research, 030207 dermatology & venereal diseases, 03 medical and health sciences, Psoriatic arthritis, 0302 clinical medicine, Quality of life (healthcare), medicine, Psoriasis, Cloud database, Online, Original Research, 030203 arthritis & rheumatology, Internet, Medical education, Patient-reported outcomes, business.industry, Patient portal, medicine.disease, Medical research, 3. Good health, Symptoms, Portal, The Internet, business |
| الوصف: | 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. |
| وصف الملف: | application/pdf |
| تدمد: | 2190-9172 2193-8210 |
| DOI: | 10.1007/s13555-018-0242-5 |
| URL الوصول: | https://explore.openaire.eu/search/publication?articleId=doi_dedup___::e18ec43e9ed0e47229099f2cb55ea033 https://doi.org/10.1007/s13555-018-0242-5 |
| Rights: | OPEN |
| رقم الانضمام: | edsair.doi.dedup.....e18ec43e9ed0e47229099f2cb55ea033 |
| قاعدة البيانات: | OpenAIRE |
| تدمد: | 21909172 21938210 |
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| DOI: | 10.1007/s13555-018-0242-5 |