Here’s a question I received recently from a clinician I met at a conference. He had expressed interest in the Pew Research Center’s health and technology surveys and was now following up:
We are in the process of revising our patient forms and this may be a good time to add 1-2 questions that might best assess e-health utilization for the purposes of future data retrieval. Can you share examples of the questions I can use?
My reply is below, shared in the spirit of public Q&A so other people can contribute and we can learn together. Continue reading
I’m re-sexifying the top of this post since it’s so long and I want people to get these key take-aways (read on for details on each one):
- Expect clinical trial participants to share news with their networks. Plan accordingly.
- Make your information attractive and share-able where people already are, on Facebook, Tumblr, Pinterest, etc.
- Find your local Lady Gaga.
- New Coke is a model for what not to do when engaging a community.
- “Re-sexify” a repetitive message because there are some things you can never say enough.
- Integrating a new social media tool is like having a new employee, it’s that much of a productivity hit.
I participated in the National Institutes of Health’s HIV/AIDS Clinical Trials Networks Communications Symposium on May 9, 2013, sharing Pew Research data about internet and cell phone use across the globe and, in particular, how people in the U.S. gather and share health information, online and offline.
My notes from the discussion are below, but I make no claims about them other than I wrote down stuff I was curious about or thought would have universal application: Continue reading
I think of myself as a public service researcher. The Pew Charitable Trusts and the California HealthCare Foundation provide the funds for the work I do and, in turn, I do everything I can to inject the findings into the public conversation: publish reports and data sets online, for free; talk to reporters and bloggers about the findings; answer questions from interested members of the public; give briefings to policymakers, etc.
As I’ve increased my “surface area” (ie, public availability) I have heard from more and more people who want my advice about their idea for a public health intervention, new website design, health app, business plan, or venture capital strategy (and that’s just this week). But I can’t get my work done if I don’t draw a hard line. So, most of the time, I turn down those requests for private consultations.
However, there are two ways that I can serve those individuals and serve the public: answering their questions in the open, on Twitter and in blog posts. Continue reading
Peggy 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
Laura Landro’s column in the Wall Street Journal today is a must-read: Adding Up Diagnosis Errors. Why? Let me count the ways:
- She is one of the most thorough, informed health care reporters around.
- She is covering an important topic that should be of interest to everyone.
- The study is behind a paywall so media coverage is the only way the general public can learn of the findings. Continue reading
I’ve been thinking about the role of the Pew Research Center* in the world, particularly in regard to how we communicate and disseminate our work.
Here is my idea:
We are both a mirror and a window.
We hold up a mirror to society, reflecting back the current state of all sorts of things, like marriage, immigration, social media, and religion. We don’t tell you what to do about any aspect of it. We just want you to see yourself as you really are. Continue reading
Thanks to multiple requests, and our hope to be useful and responsive to our audience, the Pew Research Center posted a preliminary version of the September 2012 health survey data. Please note that this version includes the topline, questionnaire, CSV file, and SPSS file. Here’s an explanation of our data resources if you have questions about how to access these files. We will upload the full cross-tabs later this spring, after the publication of our final report based on this survey.
This survey has served as the basis for the following reports:
Mobile Health 2012
Health Online 2013
Tracking for Health
I would love to hear about any revelations (or publications) that result. You can send email (sfox at pewinternet dot org) or a tweet (@SusannahFox). Or post a comment below if you want to publicly share what you find.
As always, thanks to my colleagues at the Pew Research Center and the California HealthCare Foundation for their support for this research.
If the health geek tribe had its own “Most Viewed” ranking on the New York Times site today, “Big Data is Great. But So Is Intuition” by Steve Lohr would be near the top. Everyone I respect (who’s awake, reading, and sharing) is tweeting about it.
Big Data proponents point to the Internet for examples of triumphant data businesses, notably Google. But many of the Big Data techniques of math modeling, predictive algorithms and artificial intelligence software were first widely applied on Wall Street… The problem is that a math model, like a metaphor, is a simplification.
Read the whole column — the online version contains links to background material on all the people and articles mentioned. But also consider the specific implications for health and health care. And be assured that others have been thinking critically about Big Data, too.
For example, my post last June about IBM Watson’s foray into medicine generated a spirited debate in the comments about what source material Watson would be fed and what other models might emerge to take advantage of health care data. Strata Rx 2012 featured multiple speakers on data & analytics, as did the Wired Health Conference: Living By Numbers.
Let’s keep the conversation going — and not just by RT’ing Lohr’s column. What other examples of Big Data hype do you see? What examples of Big Data’s promise do you see, as well? Where can people learn more about Big Data’s role in health and health care?
– Joseph Newton Pew Jr., 1946 (a key part of the history of the Pew Charitable Trusts)
I explain why this has become one of my mottos in an interview with Chris Snider: Just Talking.
“People who think that people with disabilities can’t do anything, that we’re fragile and in need. People who think we are inspirational and think we can fly to the moon if we wanted to. People who treat us like everyone else, who know that we’ll ask for help if we need it but otherwise we’re fine.” — Kelsey, age 16.
For more about Kelsey, see: Facial Paralysis, Not Personality Paralysis (my latest post on e-patients.net)