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 →
I wrote this as a comment last year in response to a question about why Medicine X was so magical. I’m elevating it to a post thanks to encouragement from E-patient Dave and because I’d love to hear from other people about how they choose events to attend.
5 criteria I consider when I receive an invitation to a conference:
1) Organizer — is it an individual or an organization? Do I know them? Do they include patients and caregivers in their plans, such as on their program committee? Do I like them — ie, would they pass the “have a beer with them” test? I consider the personality of the event to be a reflection of the host(s). It is my #1 consideration since everything follows from whether I trust the organizer(s). Continue reading →
My friend Wendy Sue Swanson, MD, delivers a passionate argument for listening more than talking online and, in that way, seeing “where myth is being created” so she can better infuse her own communications with facts.
I couldn’t agree more, so I’m adding it to my list of “participatory research” resources for my Stanford Medicine X Master Class. If you see other examples of people who invite participation in their work, please let me know here in the comments, on Twitter, or by email (sfox at pewinternet dot org).
Poetry speaks to all people, it is said,
but here I would like to address
only those in my own time zone,
this proper slice of longitude
that runs from pole to snowy pole
down the globe through Montreal to Bogotá. Continue reading →
I’m going to teach a 90-minute class on participatory research at Stanford Medicine X in September, so I’m going to start blogging resources I plan to incorporate (or that simply inspire me). As always, I’d welcome suggestions, comments, and questions.
First up, Kate Crawford’s Strata 2013 talk about “big data”:
“If iron ore was the raw material that enriched the steel baron Andrew Carnegie in the Industrial Age, personal data is what fuels the barons of the Internet age.” – a line from Somini Sengupta’s article in the Sunday New York Times, “Letting Down Our Guard With Web Privacy.”
I think personal data is fueling health innovation, which is why I hope Sengupta’s article is widely read in the health world. Who are the barons in the new health care enterprise? Who are the serfs? What assumptions are being made and what choices do people have about their health data — and are they aware of them? Continue reading →