But don’t just take my word for it, read this post by Katherine O’Brien of the Metastatic Breast Cancer Network — the bloggers I turned to first when I wondered about the “insider view” of the article. The post almost entirely praises Orenstein’s thorough reporting and illumination of key issues. Continue reading →
Here’s a question which inspired me today, received via email from Christie Silbajoris, director of NC Health Info:
My library is rethinking its provision of services to the public. We’ve got a history of going beyond what the average academic health sciences library provides in this area but in this age of budget cuts (and in consideration of other factors) we’re taking another look to see if there is something we should be doing that would be more meaningful and helpful to the NC citizens. I’m most interested in the explosion of peer-to-peer health care and mobile information and think we might be able to make an impact in these areas. Do you have any thoughts about possible roles that academic health sciences libraries could play?
I sure do, but they are only ideas, inspired by what I’m observing, so take them as such. Continue reading →
Mark Senak’s post, “World AIDS Day: The Past Cannot Be the Future,” inspired me to write an epic comment about different perspectives on illness and care delivery, so I adapted and expanded it to share here:
I recently read Susan Sontag‘s two essays, “Illness as Metaphor” (about TB & cancer, published in 1977) and “AIDS and Its Metaphors” (published in 1988). Sontag’s opening lines about the “kingdom of the well” and the “kingdom of the sick” helped animate for me the experience of a newly diagnosed patient (who now can go online to talk with other pioneers, form posses, share maps, and better navigate).
She wrote the first essay when she was a cancer patient and discovered the outrageous truth:
In France and Italy it is still the rule for doctors to communicate a cancer diagnosis to the patient’s family but not to the patient…Cancer patients are lied to, not just because the disease is (or is thought to be) a death sentence, but because it is felt to be obscene — in the original meaning of that word: ill-omened, abominable, repugnant to the senses.
In 1988, vicious metaphors were springing up around the new “enemy” of HIV. As she writes: “Now the generic rebuke to life and to hope is AIDS.” Continue reading →
Sachin Jain and John Rother’s JAMA commentary, “Are Patients Knights, Knaves, or Pawns?” is an article that begs to be shared. The first time I read it I had to stand up, I was so excited — how can I design a survey to capture these questions?! was my first thought. My second thought was how soon can I post this online and get the debate rolling?
Here’s a quick, wonky summary: Jain & Rother use Julian Le Grand’s metaphor concerning the motivations and behavior of post-war public servants and citizens in Britain as a springboard to consider how health policymakers in the U.S. might anticipate a transition to a patient-centered system or its alternatives. If Le Grand’s thesis is new to you, please read “Power to the pawns: For excellence in public services, should societies rely on altruism or self-interest?” (The Economist, October 30, 2003).
This is a debate that needs wide exposure. So, since the full text of the article is behind a paywall, I’m going to excerpt it lavishly. Here goes (with footnotes translated to links): Continue reading →
On March 11, the White House hosted an event to mark National Women and Girls HIV/AIDS Awareness Day. The event was livestreamed from whitehouse.gov and is archived on YouTube:
I have written before about the unique nature of conferences concerning sexually-transmitted infections, but I didn’t expect to hear the same frank talk at a White House event. But why not? Why should a health professional be shy about asking the audience, as Gina Brown did, “When a woman stands up, which way does her vagina point?” The answer may surprise you and if you turn the volume up on your speakers you can hear someone in the audience say, “Oh!” Later in her talk, Dr. Brown urged the audience to Google “female condom” so they can better understand the challenges people face in trying to use it. Yes, a clinician from the National Institutes of Health urged people to Google something because she thought it would be the quickest path to understanding it. Continue reading →
This is a guest post by Jessica Mark, healthfinder.gov and Outreach Program Manager, Health Communication and eHealth Team in the Office of Disease Prevention and Health Promotion at the U.S. Department of Health and Human Services
We all struggle with complex health information. In fact, as many as 9 out of 10 adults experience limited health literacy skills at one time or another. How does this affect the way we find, understand, and use health information on the Web? This is a critical question for the e-patient era. After all, it’s only a matter of time before we are all e-patients. Continue reading →
The Pew Internet Project recently issued a short report noting that people living with disability are less likely than other adults in the U.S. to use the internet: 54%, compared with 81%. The first question many people ask when they hear that is, Why? The second is, What can be done? The third is, or should be, What can we learn from this? Continue reading →