Posts Tagged ‘Health care social media’

  • Do Not Kiss Me

    Do not kiss me because I have a suppressed immune system… In “Kiss My…” a physician blog in Rheumatology News, Dr. Larry Greenbaum wrote, “I charged him level 5 for taking so much of my time, for bad-mouthing his previous doctors, and for incessant whining.” Noontime Monday I clicked into the Facebook (FB) feed for […]

  • Sample Size: 1 of Every 100 RA Patients in U.S. Are Members of Our Facebook Page

    Transparent objectives of a patient community As the author of this blog, I’m completely transparent about why I’m here: Stunned at learning what so many RA patients endure, I committed to doing everything possible to change that. The 3 specific goals have been the same for 3.5 years on the About Page, as created during the […]

  • Mayo Clinic Contest! 5 Ways Patients Can Make a Difference!

    1) Rheumatology patients are teaching medical students in Britain! The biggest difference patients can make is to help the medical profession understand their conditions better. Patient instructors in rheumatology are instructing undergraduate and postgraduate medical students are viewed as “an excellent, relatively under-utilised, resource.” “They are especially effective at enhancing students’ understanding of the impact […]

  • Energizing E-patient Engagement – Collaborations that Count

    This blog is not about me because it’s always been much more than a way to share my own journey. This blog tells OUR story – the true story of Rheumatoid disease, the people who live with it, the fight to cure it, and the process that patients have entered to participate in improving our […]

  • Tweeting an EMG: Another Way to Research Pain

    Really important stuff that I read last week, while researching pain scales, will not be on the blog today. I’ve been thinking a lot about how differently a disease affects us and whether we can honestly communicate about that. When Dana asked for resolutions at the weekly #HCSM (healthcare communications in social media) chat, I said I […]

  • Behind the Scenes Video: Patient at a Social Media Conference

    Telling it like it is. On camera. It’s uncomfortable. It’s very hard to talk about harsh pain. Why does pain seem so embarrassing? I even gave birth in quiet agony a few times because of that. 3 aspects of RA that are difficult to discuss It’s hard to talk about pain, so most of us […]

  • Fears of Social Media: a Pre-Halloween Boogie Man Post

    I’m hoping this happy little post might help anyone who is on the fence about blogging or using other forms of internet 2.0 (meaning “interactive websites”) to communicate about healthcare. This article is part of an Advisory Board essay that I contributed to the Mayo Clinic Center for Social media to be used in a […]

  • Positive Signs for Rheum Patient Activism

    Seeing is believing: rheum patient activism Last Friday, a meeting of the Emirates Society for Rheumatology (ESR) in Abu Dhabi heard a presentation from Katrina Thornley who has had Juvenile Rheumatoid Arthritis (JRA) for 27 years (since age 2). Dr. Mustafa Al Maini, President of the ESR, comparable to our ACR (American College of Rheumatology), […]

  • Reliable Sources: Orencia Cough Side Effect & Notions of e-Patients

    If I cited a percentage of patients who get a cough from Orencia, then I’d quote a source – probably a clinical trial. However, if I merely say, as a patient, that Orencia gave me a cough, then that is a firsthand experience and that’s another type of credible source for other patients. Diabetes blogger […]

  • Alice Goes to Jacksonville: Mayo Clinic Center for Social Media

    What’s the Mayo Clinic Social Media Health Network? I joked a lot about Alice in Wonderland this week as Katie Beth and I traveled to Jacksonville for the first meeting of the Advisory Board for the Mayo Clinic Center for Social Media (MCCSM). It was combined with a conference for members of Mayo Clinic’s new […]

  • The Next Three Days: a Movie Review with a Twist

    The movie: The Next Three Days Last night we watched the movie The Next Three Days starring Russell Crowe (John) & Elizabeth Banks (Lara) about a professional woman with diabetes who is accused of murder.  Lara loses every appeal and her husband John becomes desperate while watching his wife and their young son Luke struggle […]

  • Health.com Replies to RA Warrior

    An editor at Health.com sent this message to me and my readers as a response to my post Three Things Not to Say about Plagiarism to a Blogger. She did not claim to speak for the writer. Please see my response below. I’m the Health.com editor who worked on this story, and I just got […]

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