eHealth » consumer health information

Social Media Moving into Healthcare’s Mainstream

John Sharp — Tue, 03 May 2011 02:10:00 +0000

TuDiabetes Study

Two articles today demonstrate the growth of influence in social media in the healthcare arena.

The first is a research article about TuDiabetes.org 15,000 members on PLosONE permitting data donation to measure H1c in diabetics to demonstrate a model for cohort and translational science and for use as a complementary surveillance approach. This research combined with a recent study of PatientsLikeMe demonstrate the potential power of utilizing patient reported results and outcomes as a research tool.

The second article appears in the Archives of Internal Medicine, “Professionalism in the Digital Age.” Get a copy of the full version if you can. It represents a positive approach to social media for physicians and other healthcare providers while noting some cautions, such as, the difficulty of separating personal from professional in social media. The article does not recommend social media as a means of communicating with patients but unlike some recent articles, does not discourage its use.

“The development of a “dual-citizenship” approach to online social media that separates public and private personae would allow physicians to both leverage networks for professional connections and maintain privacy in other aspects. Although social media posts by physicians enable direct communication with readers, all posts should be considered public and special consideration for patient privacy is necessary.”

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Medpedia adds Clinical Trials

John Sharp — Thu, 04 Feb 2010 03:17:01 +0000

Medpedia continues to add vetted health information. In addition to health topics in a Wikipedia style, they had added news and RSS feed from blogs (including this one). Now they have developed integration with ClinicalTrials.gov. The unique approach they are promoting is linking from articles to related clinical trials. I tried this for myself and was able to find that it worked particularly well for some terms like “diabetes.” Also, the search function has good features and the advanced search, called “Clinical” includes Study Type (Interventional, Observational, Expanded Access), Interventions, and Outcome Measures. The results for a clinical trial are well laid out on the page with boxes for the centers that are part of the clinical trial. I found some interesting trials under childhood leukemia including those related to late effects but did not find any trials linked from the article on late effects of childhood cancer. Not sure if that is an indexing problem for Medpedia or ClinicalTrials.gov.

Medpedia, despite its growth, has some gaps. For instance, if you look for articles by the alpha index, like leukemia, you find none, but do a search and dozens of very specific articles appear (hairy cell leukemia). Overall the number of articles, organization and layout of Medpedia continues to improve. Try out the Clinical Trials search for yourself and see what you think.

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The Empowered (and Imperiled) Health Care Consumer in the Age of Internet Medicine

John Sharp — Tue, 29 Jan 2008 08:04:00 +0000

This new report by Center for Medicine in the Public Interest, raises a strong alarm for consumers and health care websites on the lack of attention to detail by consumers. The report labels these consumers “Insta-Americans” with short attention spans and poor attention to the source of the medical information they are reading.

In one sense, the web has encouraged quick scanning of information which may be fine if you are scanning on eBay or a social networking site. But when it comes to life and death or even health and wellness, different rules should apply.
The 34 page report details four specific case studies of mis-information: Crestor, Avandia, teen suicide and SSRIs and autism and vaccines. The bottom line is that through websites promoting drugs, anti-phamacuetical activist, class-action or litigation sites and spam blogs, misinformation gains a hold which is difficult to counter.

The conclusion is worth noting: “This practice of ?do-it-yourself online medical diagnosis can help arm patients and healthcare consumers with valuable research. But if this research is gathered in a vacuum, without the benefit of input from a credible physician, or certification of the information from an official organization….”

This valuable report needs to produce consumer education beyond “buyer beware” to “buyer, read more carefully.”

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