Crowdsourcing a Survey: Health Topics

July 16, 2010 · Filed Under research issues · 74 Comments

The Pew Internet & American Life Project will soon go into the field with our next health survey and we need your help.

One of our core findings (8 in 10 internet users, or about two-thirds of U.S. adults, look online for health information) is based on a series of questions that is tweaked in each survey. We re-word or separate concepts, cut some topics, and add others. Are there topics missing from the list? Which ones deserve to be repeated this year? No promises, but I asked for similar feedback in 2008 and implemented a few of the suggestions (see the “2008 only” topics below).

a. Information about a specific disease or medical problem (asked in 2002, 2004, 2006, 2008: results)

b. Information about a certain medical treatment or procedure (02, 04, 06, 08: results)

c. Information about experimental treatments or medicines (02, 04, 06, 08: results) Read more

Tags: pew internet project, survey

Crowdsourcing a Survey: Reassured? Overwhelmed? Eager? Confused?

November 5, 2008 · Filed Under demographics · 8 Comments

The Pew Internet Project is finalizing our fall health survey and we are now in the painful cut phase. Here’s a question I’m hoping to save in a shorter form:

At any point in your last search for health information online did you feel any of the following things? At any point, did you feel…?
Read more

Tags: data, pew internet project, survey

41% of Adults are “Activated Patients”

October 21, 2008 · Filed Under demographics · 8 Comments

The Center for Studying Health System Change has released another information-packed report, How Engaged Are Consumers in Their Health and Health Care, and Why Does It Matter. The researchers created a “Patient Activation Measure” and apparently 41% of adults are what we might call e-patients (empowered, equipped, etc.).

The Center for Studying Health System Change: Level of Activation for U.S. Adults, 2007

Tags: data, e-patient, survey

Health Care Consumerism

April 14, 2008 · Filed Under demographics · Comment

The Deloitte Center for Health Solutions released a very interesting report on “Health Care Consumerism” which looks at five “zones” of activity: traditional health services, self-directed care, alternative and non-conventional health services, financing, and information seeking.

I recommend checking out their report for a few reasons:

1) Many of their findings ring true to me. For example:

Myth: Consumers trust their doctor to make decisions for them.
Reality: The majority of consumers want to share decision-making with their doctor; only 20% are content to let their doctor control those decisions unilaterally.

Tags: consumer, data, online, participatory medicine, survey, typology

E-health Reality Check

January 14, 2008 · Filed Under trends & principles · 1 Comment

Press coverage of the Pew Internet Project’s recent report, “Information Searches That Solve Problems,” focused on how “libraries still matter” especially among young people.

One aspect that I think merits further attention is how people interact with various information sources when they are dealing with a serious illness or health concern.

Tags: cancer, doctors, e-patient, hints, librarians, survey

Online Patient Groups

June 13, 2007 · Filed Under patient networks · 10 Comments

Laura Landro’s column in the Wall Street Journal features a series of profiles of online patient groups like MPDinfo.org and ACOR.org, among others.

Now seems like the right time to post some data that I’ve been holding back, waiting for the right opportunity to talk about it publicly.

Tags: ACOR, health, Landro, mpdinfo, patient groups, survey

My Idea of Great: Health Data Geeks Convention

May 22, 2007 · Filed Under key people · 1 Comment

I was lucky enough to be invited to a “Data Users Conference” sponsored by the Health Information National Trends Survey/National Cancer Institute, which really should have been called Health Data Geeks Unite! If you have a moment, I highly recommend browsing through some of the presentations, particularly the following:

David Stinchcomb showed how isopleth maps can be used to smooth regional data into a lovely “weather map” connecting low belief in the risk of smoking with the reality of high lung cancer mortality rates. (If you like that kind of data mapping, check out Social Explorer.)

Jon Miller argued for the need for “biological literacy” since the 20th century was the “age of physics” and the 21st century will be the “age of biology.”

Michael Link reminded us to watch out for the effect of cellphone-only households on classic phone survey results. A snail mail survey found that 52% of cell-only respondents had been recently tested for HIV vs. 35% of landline respondents, for example. 40% of cell-only respondents are binge drinkers vs. 23% of landliners. (This was news to me since my colleagues in the political end of the Pew Research Center had found that cell-only respondents were politically akin to landliners. Watch this space for updates for the 2008 election cycle!)

Tenbroeck Smith said that the American Cancer Society call center handles about 1 million calls per year, while cancer.org handles about 20 million visitors.

My presentation focused on how e-patients are using the latest participatory media (Flickr, MySpace, YouTube, etc.) to document, advocate, educate, and illuminate their own health journeys.

Tags: data, hints, national cancer institute, survey

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