Little's latest (2013) paper:
"Objective: To assess the clinical value of online, self-reported PD symptom data recorded by users of the
health-focused Internet social research platform PatientsLikeMe (PLM), in which patients quantify their
symptoms on a regular basis on a subset of the Unified Parkinson‟s Disease Ratings Scale (UPDRS)."
Data
6074 PD patients on PLM
100 included in this study, qualification to be included 15 UPDRS scores.
Results
"Validation demonstrated the high-frequency self-reported data is consistent with a low-frequency clinical data
set in common use in clinical PD studies. The distributions of PLM to PD-DOC “off” scores are essentially the
same".
Obviously it can be perfected, but as I see it, the technology is in place. The question now is:
Is there the political will to run simple clinical trials in this way?
Reference
[1] M.A. Little, P. Wicks, T.E. Vaughan, A. Pentland (2013)
Quantifying short term dynamics of Parkinson’s disease using self-reported symptom data from an Internet social network
Journal of Medical Internet Research, 2013;15(1):e20, doi:10.2196/jmir.2112
http://www.maxlittle.net/publication..._pd_web_v2.pdf
John