Last month in Cambridge I met Twitter friend Bryan Vartabedian, M.D. (Twitter @Doctor_V) at a meeting at Vertex Pharmaceuticals. We’ll cross paths this fall on the conference speaking circuit. [Recently] on his blog he raised a rowdy, rough, but valid point: As e-patients (obviously including me) get into the business, should they/we be regulated? He said:
Will industry be required to publicly list monies used for sponsorship, travel and swag support of high profile patients in the social sphere?
Should high visibility patients who serve as stewards and advocates disavow themselves of contact with pharma just as many academic medical centers have begun?
As is often the case, I don’t have an answer. I’m just raising the questions. Smart questions. My short answer:
Fine with me if industry discloses those payments. Nothing to hide.
On the other hand, I think it’s nuts and counterproductive for consumers in any industry to disconnect.
Academic medical centers have tons of evidence of influence corrupting the academic processes that are at the core of (supposed) science. For patient advocates I don’t see that there’s currently a problem that would justify adding regulators, the ensuing budget impact, etc.
Besides, there’s a key difference: Academics are supposed to vet industry. It’s their job in this context. Patients, on the other hand, are the consumers — the ones the industry’s supposed to serve. Read more »
*This blog post was originally published at e-Patient Dave*
By Lisa Neal Gualtieri. (Her earlier much-commented post on this subject is here.)
The Boston Globe reported this month on the sentencing of a former US Airways Express pilot, Stephen Sharp, “for selling a powdered drink mix over the Internet that he claimed was ‘100 percent’ effective in helping drug-using truck drivers, pilots, and train engineers pass federally mandated drug tests.” The ungrammatically-named “yourintheclear.com” no longer seems to exist.
Mindful of ongoing debate by Gilles Frydman and others about indicators of health website credibility, I searched for other sites selling similar products (there is no shortage) and looked on sites like Craigslist where people post questions about how to pass drug tests and how to detoxify. Based on a quick perusal, I found answers ranging from product advice that I suspect is similar to what “yourintheclear.com” sold to more than I ever want to know about urine temperature to what seemed like common sense advice. Read more »
*This blog post was originally published at e-Patients.net*
Today [Aug 28] I’m participating in the workshop “Engaging Minority Communities in Safer Healthcare” organized by MITSS (Medically Induced Trauma Support Services), a Boston non-profit I’ve written about before.
The current speaker is Lisa O’Connor, VP of Nursing at Boston Medical Center. She just showed this four-minute safety awareness video, produced by Quantros. Much of its content will be familiar to our readers here (the frequency of medical errors and hospital acquired infections), but I’m posting it because of its good, concrete, specific actions every patient should know.
The part with specific actions for patients starts around 2:30. (My highlights are below.) Read more »
*This blog post was originally published at e-Patients.net*
I love this — a website that could’ve ONLY been created by cancer patients. From ThinkAboutYourLife.org:
Find empowerment: Anything you can do to feel like you are taking control of your illness and treatment will help you. Think About Your Life was developed by cancer survivors. We have used the tools on this website in our own experiences, and we hope to inspire you do the same.
This website provides easy-to-use tools for each stage of the cancer journey to help you:
Process your thoughts and feelings: Elizabeth shared the “Good Day, Bad Day” tool with her family to tell them how they could help her throughout treatment.
Take control and make decisions: Amanda used her “One Page Profile” with her doctor to discuss the impact of treatment on her life.
Think about the “what now” and the “what next”: The “Hopes & Fears” tool helped Susan think about the next few months of her life after treatment.
I learned about the site from its creator, Amanda George, who commented on a recent post about person-centered health. Hot diggety. Don’t you just love how the Internet lets us connect with each other and share ideas?
A patient apologized to me for asking so many questions. “There’s no need to apologize,” I said to the patient, “It’s wonderful that you have so many questions concerning your healthcare.” I mentioned to her that she is an “empowered and engaged patient,” and that’s a good thing.
It’s no secret that health consumers are turning to the Internet for health information.
In a recent article from MediaPost News, Gavin O’Malley writes that, according to new a study by Epsilon Strategic & Analytic Consulting Group, “40% of online consumers use social media for health information — reading or posting content — while the frequency of engagement varies widely. According to the study, individuals who use healthcare social media fall into two broad groups: the 80% who are highly engaged patients, and take active roles in health management; and the 20% who lack confidence to play an active role in their own health.” Read more »
*This blog post was originally published at Health in 30*
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