Patient, study thyself.
The past 15 years have seen the emergence of a new paradigm in medical research, namely of people living with medical conditions (whether patients, parents, or caregivers) using digital tools to conduct N-of-1 trials and scientifically grounded research on themselves, whilst using the Internet to fo...
| Publicado en: | BMC Medicine Vol. 16; no. 1 |
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| Autor principal: | |
| Formato: | Journal Article |
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BioMed Central
11/23/2018
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=133163645&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 133163645 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 17417015 1CI2 jtl: BMC Medicine issn: 17417015 maglogo: N pubinfo: dt: 11/23/2018 vid: 16 iid: 1 pid: 24147 pub: BioMed Central artinfo: ui: 133163645 133163645 NLM30470218 10.1186/s12916-018-1216-2 NLM30470218 133163645 ppct: 1 formats: tig: atl: Patient, study thyself. aug: au: Wicks, Paul affil: PatientsLikeMe, 160 2nd Street, 02142, Cambridge, MA, USA sug: subj: Self Care Methods Self Care Trends Internet Research, Medical Trends Male Communication Self Care Adverse Effects Ferrans and Powers Quality of Life Index Male ab: The past 15 years have seen the emergence of a new paradigm in medical research, namely of people living with medical conditions (whether patients, parents, or caregivers) using digital tools to conduct N-of-1 trials and scientifically grounded research on themselves, whilst using the Internet to form communities of like-minded individuals willing to self-experiment. Prominent examples can be found in amyotrophic lateral sclerosis/motor neurone disease (the 'lithium study' on PatientsLikeMe), Parkinson's disease ('digital patient' Sara Riggare), and diabetes (the 'open artificial pancreas' of the #WeAreNotWaiting movement). Through transparency, data sharing, open source code, and publication in the peer-reviewed scientific literature, such activities conform to expected scientific conventions. However, other conventions, such as ethical oversight, regulation, professionalization, and the ability to translate this new form of relatively biased data into generalizable decisions, remain challenged. While critics worry such participant-led research merely muddies the waters of high-quality medical research and exposes patients to new harms, the potential is there to enroll millions of active minds in unravelling the wicked problems of complex medical disorders that degrade the human health span. pubtype: Academic Journal doctype: Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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