The special perils–and pleasures–of medical blogging (discussion): Paul Raeburn and Maia Szalavitz
When Charlie Sheen spread his psyche across the web, Drew Pinsky and many others had no problem diagnosing him—a person they’d never met. The same thing happened with Jared Loughner–plenty of shrinks were happy to say what was wrong with him despite never having examined him, as were plenty of bloggers. Medical blogging is littered with traps that we can fall into—disease mongering, raising false hopes, violating patient privacy, and skirting around tricky ethical issues. At what point is it OK to discuss symptoms that could indicate mental disorder— and when does it do readers and affected people a disservice? When do efforts to destigmatize disease become advocacy and why do many affected people actually prefer medicalization to other labeling?
The basic science behind the medical research: where to find it, how and when to use it. (discussion) – Emily Willingham and Deborah Blum
Sometimes, a medical story makes no sense without the context of the basic science–the molecules, cells, and processes that led to the medical results. At other times, inclusion of the basic science can simply enhance the story. How can science writers, especially without specific training in science, find, understand, and explain that context? As important, when should they use it? The answers to the second question can depend on publishing context, intent, and word count. This session will involve moderators with experience incorporating basic science information into medically based pieces with their insights into the whens and whys of using it. The session will also include specific examples of what the moderators and audience have found works and doesn’t work from their own writing.
The Limits of Transparency: Self-Censorship in Physician Writers (discussion) – Judy Stone and Shara Yurkiewicz
This session is about more than HIPAA violations. Being a physician or a physician-in-training involves loyalties on a number of levels. We have moral obligations to ourselves, to our patients, to our colleagues, and to the community at large. Sometimes, what we want to say on behalf of one group conflicts with the interests of the others. When writing, we don’t get to choose our audience; the words are open to all. How can we say something meaningful that serves a community’s greater interest without compromising our professional loyalties or damaging our reputation among our medical peers? Or, how can we reflect upon the profession in a constructive way that doesn’t alienate the public or further erode the trust between patients and their doctors? Medicine is a tight-knit community where–like it or not–reputation matters and self-policing reigns supreme. Criticism is not always received well, even if it’s kept internal. If information is broadcast to those outside the profession, the author can be perceived as anything from less-than-serious to a liability to the profession’s image. (Neurologist and best-selling author Oliver Sacks has been criticized as “a much better writer than he is a clinician” and “the man who mistook his patients for a literary career.”) There is currently only vague policy and precedent with regard to social media and blogging. “Use common sense” seems to be the theme, but, as we’ve increasingly witnessed, the boundaries of that “sense” vary widely among physician writers. What kind of balance can be struck to write substantially, professionally, and honestly?
Advocacy in medical blogging/communication–can you be an advocate and still be fair? (discussion) – Emily Willingham and Maia Szalavitz
There is already a session on how reporting facts on controversial topics can lead to accusations of advocacy. But what if you *are* an avowed advocate in a medical context, either as a person with a specific condition (autism, multiple sclerosis, cancer, heart disease) or an ally? How can you, as a self-advocate or ally of an advocate, still retain credibility–and for what audience?
Genomic Medicine: From Bench to Bedside (discussion) – Kristi Holmes and Sandra Porter
This session will serve as an introduction to the topic of personalized medicine from the perspective of major stakeholders including: scientists, physicians, patients and their advocates, community groups and media professionals. We’ll begin with an introduction to the basic concepts and efforts in this area, followed by a discussion of information resources to serve stakeholder groups including relevant clinical, consumer health, and advocacy and policy resources. Various initiatives by government agencies, the commercial sector and academia will be discussed, including: Genetics Home Reference, 23andMe, PatientsLikeMe, and more.
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