Ribbons, ribbons, everywhere

Posted on by
Reply

Ribbon shape on wallPeggy Orenstein‘s article, “Our Feel-Good War on Breast Cancer,” is worth one of your precious NYTimes.com chits (unless, of course, you’re a subscriber, in which case you have hopefully already devoured it).

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 →

How I choose which conferences to attend

Posted on by
24

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 →

Must-read: Adding up diagnosis errors

Posted on by
13

Laura Landro’s column in the Wall Street Journal today is a must-read: Adding Up Diagnosis Errors. Why? Let me count the ways:

  1. She is one of the most thorough, informed health care reporters around.
  2. She is covering an important topic that should be of interest to everyone.
  3. The study is behind a paywall so media coverage is the only way the general public can learn of the findings. Continue reading →

How do self-trackers handle loved ones who aren’t self-trackers?

Posted on by
5

– intriguing question raised by Emily Kramer-Golinkoff on Twitter. I’d love to hear if people have experiences or advice to share in the comments.

I wonder if the answer depends on how visible someone’s tracking is or whether they share their activity with their loved ones.

If you are new to the idea of self-tracking, you may want to check out the Quantified Self movement and my own contribution to understanding the phenomenon: Tracking for Health (a Pew Research report released in January 2013). Continue reading →

Never assume that what you are seeing or experiencing is everyone else’s reality.

Posted on by
Reply

Atul Gawande can shine a bright spotlight, even with just a few tweets. On Saturday he linked to an article about new social media guidelines for physicians which states:

Aside from not “friending” patients [on Facebook], the guidelines also recommend the following to physicians:

• Don’t use text messaging for medical interactions, even with established patients, except with caution and the patient’s consent. Continue reading →

On listening, as a tool

Posted on by
2

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).

Shared moment

Posted on by
1

This poem captures how I feel about being online sometimes, the immediacy and intimacy of a shared moment with unseen people. So, here it is, you fellow people who share:

Eastern Standard Time

By Billy Collins

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 →

Kate Crawford on algorithmic illusions

Posted on by
25

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”:

Who provides the fuel for the health data fire? Hint: Look in the mirror.

Posted on by
6

“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 →