Category Archives: trends & principles

One voice, many inflections: HIV clinical trial communications

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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):

  1. Expect clinical trial participants to share news with their networks. Plan accordingly.
  2. Make your information attractive and share-able where people already are, on Facebook, Tumblr, Pinterest, etc.
  3. Find your local Lady Gaga.
  4. New Coke is a model for what not to do when engaging a community.
  5. “Re-sexify” a repetitive message because there are some things you can never say enough.
  6. 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 →

Big data, red flags, better health?

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A new interview with Stephen Wolfram on “why he thinks your life should be measured, analyzed, and improved” popped up on the same day that American Medical News ran a story advising clinicians to look for “red flags” like unfilled prescriptions and delayed screenings since it may mean the patient has lost their job or is having transportation trouble.

What if the big data vision of ubiquitous surveillance comes true and people are monitored — and helped — to a much greater degree than they are now?

No answers, just questions, but I thought I’d share. What do you think?

An aside: I love how MIT Technology Review lists “upcoming articles” at the bottom of their Big Data Gets Personal feature. I may steal that for upcoming research reports and blog posts (no dates attached, just ideas I know I’ll write about).

How should a youth-focused sexual health clinic incorporate social media and SMS into their work?

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Continuing my series of public Q&A sessions, I’ll share the following:

We are working on an innovation concept paper to a local foundation and would like to explore how to better use social media and SMS at youth-focused sexual health clinic. We need to be able clearly articulate the benefits of social media and SMS for health care access for youth and young adults. I hope you can provide some resources that may be able to help.

I began with basics:

Pew Internet: Teens

Pew Internet: Health

Pew Internet Trend Data: Adults

Pew Internet Trend Data: Teens

Digging deeper:

The most recent report on Teens and Technology and the most recent in-depth report on Health Online.

And finally, some blog posts relating most closely to your inquiry:

Going Viral Against HIV

The State of New Media and HIV

Health, Technology, and Communities of Color

You might consider texting as a mode of communication – don’t miss the discussion in the comments on this post:

Is there hope for SMS health alerts?

(Now it’s your turn: what would YOU share? What advice do you have for this newcomer to social media? Comments are open.)

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

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– 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 →

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

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“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 →

How many people use “ask a doctor” sites?

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Here’s a question I received that I thought was worth a public answer:

How many people go online to seek a doctor’s opinion about something, such as on an “ask a doctor” site?

Pew Research has not asked a survey question that specifically measures that activity, but we have something pretty close, based on our September 2012 national phone survey:

8% of internet users say they have, in the past 12 months, posted a health-related question online or shared their own personal health experience online in any way.

Of those:

  • 40% say they posted comments or stories about personal health experiences
  • 19% say they posted specific health questions
  • 38% say they posted both

Also based on the small group — just 8% of internet users:

  • 78% of those who posted a comment, story, or question about their health say that they did so to reach a general audience of friends or other internet users.
  • 11% say they posted somewhere specifically to get feedback from a health professional.
  • 4% say they posted for both a general and a professional audience.
  • 5% say none of those choices fit.

I’m not going to do the math, but it’s clear that only a tiny group of U.S. adults has, in the past year, posted a question online for a doctor to answer. The more common activity, which isn’t surprising at all, is to post a question or story for peers, family, and friends to ponder. That’s the basic idea behind peer-to-peer healthcare.

Join a discussion about “Tracking for Health”

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“When our observations about ourselves are formally collected, rather than just remembered, it’s easier to get advice and comment, and to improve our reasoning with the help of others. ‘Remember kids, the only difference between screwing around and science is writing it down,’ said Adam Savage of Mythbusters. Technology helps us write it down.”

- Ernesto Ramirez, writing on the Quantified Self blog about “Tracking for Health.” Please join us there for a discussion of the findings!

2 down, 3 to go

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I’m doing a ton of “day job” writing these days, analyzing survey data about how Americans gather, share, and create health information. Here is a rundown of the reports released so far and what’s coming up:

1) Mobile Health 2012 (Nov. 8, 2012) 85% of U.S. adults own a cell phone and, of those, 31% have looked up health information on their phone. Tracking smartphone ownership is key — half have looked up health info and one-fifth have a health app. Here are some mobile-related posts, in case you missed those discussions.

2) Health Online 2013: (Jan. 15, 2013) This is the big general-population report. New findings include: 35% of U.S. adults have gone online specifically to figure out what they or someone else might have; 26% of people looking online for health info have hit a pay wall (and very few pay). The e-patients.net discussion is off to a great start.

3) Tracking for Health: (Jan. 28, 2013) Health Data Tracking (working title; scheduled for release during the week of Jan. 28). 7 in 10 U.S. adults track their weight, diet, exercise routine, or other health indicator. But few use technology to do so. I previewed the basic findings here but the report will dive deep into the demographics, including caregivers and people living with chronic conditions.

4) Caregivers (February). All the questions covered in prior 3 reports, through the filter of people who are actively caring for a loved one, plus some new questions focused only on how the internet informs caregivers’ experiences. It will serve as an update of the Family Caregivers Online report based on a 2010 survey.

5) People living with chronic conditions (March). All the questions covered in prior reports, through the filter of people living with chronic conditions. The closest correlates in our archives are Chronic Disease and the Internet, based on a 2008 survey, and Peer-to-peer Healthcare, based on a 2010 survey.

All of this research is supported by a grant from the California HealthCare Foundation and, of course, the Pew Research Center. Can’t wait to share all that we’ve learned!

(If you have a particular interest in any of the upcoming reports, and promise not to share the results before we publish them, please email me directly and I’ll add you to the preview list: sfox at pewinternet dot org)

Thinking critically about Big Data and health care

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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.

Lohr writes:

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?