From self-reported Patient Data to Mobile predictions

  • TEDxOverlake – Dr. H. Jack West – Self-Educated Patients and The Future of Cancer Care

“Don’t believe those that say you can’t measure the return on investment (ROI) of digital and social media programs – if you can’t measure it you shouldn’t be doing it…”

He said some GPs already offer consultations via Skype and may interest many others. ‘Then I find myself thinking that’s the sort of thing that will appeal to some people. It would appeal to me,’ he said. He argued it would be much more convenient for patients and GPs.

The Internet was reported to be the second source of health information after physicians, due to its accessibility and “easiness” of use. The most commonly searched types of online health information are treatment/therapy (62% rated it as always or often), detailed (58%) and general (53%) disease descriptions, drug information (51%), side effects (51%) and scientific articles (50%).

Everyday we find PLoS ONE papers in the news. Whether it’s a science blogger in the United Kingdom, an online newspaper in China, or a national news channel in the United States, we see a lot of media coverage on our research articles.  In an effort to better track the coverage these papers receive, we’ve begun a Media Tracking Project.

Online patient communities structured around quantitative outcome data have the potential to provide an observational environment to monitor such drug usage and its consequences. Here we describe an analysis of data reported on the website PatientsLikeMe by patients with amyotrophic lateral sclerosis (ALS) who experimented with lithium carbonate treatment.