Wednesday, March 24, 2010

They could have each other, but don't

Susannah Fox at Pew Internet, a project of the Pew Research Center, has just released a very interesting report entitled "Chronic Disease and the Internet." She says to me:

I love all the reports I've written over the last 10 years, but I am especially proud of this report since it combines the best of what can be done with RDD (random digit dial) survey data (nailing down once and for all that chronic disease has a significant, independent effect on online behavior) and with qualitative data (i.e., the stories patients tell about what they do, how they thrive or bravely slog on). The increase of chronic disease worldwide is one of the great challenges of our time.

Here are some excerpts from the press release:

WASHINGTON, DC - MARCH 24, 2010 - Only 62% of adults living with chronic disease go online, compared with 81% of adults who report no chronic diseases.

"We can now add chronic disease to the list of attributes which have an independent, negative effect on someone's likelihood to have internet access, along with age, education, and income level," says Kristen Purcell, an associate director of the Pew Internet Project and a co-author of the report.

The internet access gap creates an online health information gap. More than any other group, people living with chronic disease remain strongly connected to offline sources of medical assistance and advice such as health professionals, friends, family, and books. However, once they have internet access, people living with chronic disease report significant benefits from the health resources found online.

The report, "Chronic Disease and the Internet," is based on a national telephone survey which included 2,253 adults, 36% of whom are living with chronic disease (heart conditions, lung conditions, high blood pressure, diabetes, cancer). Illustrative quotes from patients were gathered through online surveys conducted by and

Looking at the population as a whole, 51% of American adults living with chronic disease have looked online for any of the health topics included in the survey, such as information about a specific disease, a certain medical procedure, or health insurance. By comparison, 66% of adults who report no chronic conditions use the internet to gather health information.

Lack of internet access, not lack of interest in the topic, is the primary reason for the gaps. In fact, when demographic factors are controlled, internet users living with chronic disease are slightly more likely than other internet users to access health information online.

"The deck is stacked against people living with chronic disease. They are disproportionately offline. They often have complicated health issues, not easily solved by the addition of even the best, most reliable, medical advice," says Susannah Fox, an associate director of the Pew Internet Project and a co-author of the report. "But those who are online have a trump card. They have each other. Those who have access use the internet like a secret weapon, unearthing and sharing nuggets of information found online."


Susannah Fox said...

Thanks, Paul!

I'm happy to answer questions about the research here, on Twitter (@SusannahFox), or on See: Chronic Disease in Data and Narrative

jonmcrawford said...

Susannah/Paul, this made me think of a recent link from Ars Technica talking about Case Western Reserve University in Cleveland, OH funding superfast internet connections to the surrounding neighborhood, which does not have internet. (

They're actually going over the top to provide super-fast connections, perhaps if more universities or large organizations were able to share even standard dialup or wifi connections with the communities that need it, there could be more impact.

Interesting study. I would think that the networking benefits of finding others with the same chronic conditions would be just as important as the additional research available.

nasov said...

I don't really get these assumptions. I have online access, which I use daily. I choose not to go online for medical information. It falls into three categories for me: major sites with general information that is no better than a pamphlet; or nutty sites with a lot of people who suffer from depression and need other kinds of help; or papers about ideas that will benefit me if I live another ten years.
I will use the web to find side effect treatments that other people have tried. It's useful for that. My family and friends use it to find out frightening statistics.

Anonymous said...

This important Pew report concerning Chronic Disease and the Internet ties in nicely with the recent, major Gates / IMLS study: Opportunity for All: How the American Public Benefits from Internet Access at U.S. Libraries

Pertinent recommendation (1 of 6):
“Public and private health officials and organizations should support the public library as a partner in disseminating health and wellness information and as a resource for future health communications research.”
“The number of users seeking health information presents clear opportunities for
broadening public health promotion and wellness campaigns. With
approximately 37 percent of the respondents reporting that they used library
technologies to search for health information, which amounts to an estimated
28 million people, libraries are an important conduit for delivering health
information to the public. Users at local libraries appear to be highly motivated
to change their health behaviors. Among the respondents that reported using
library technology to learn about their diet and nutrition, 83 percent decided to
make changes in their diets. Among users seeking information about exercise or
fitness, 84 percent (an estimated 11 million users) decided to make changes in
their exercise habits. Health information campaigns through library systems
may benefit from the fact that many users are already motivated to find out
about their health and are ready to make changes in certain health behaviors.
And because libraries are so widely distributed in communities across the
country, public health information can be targeted to address an area’s needs
based on local health surveillance information or the presence of a particular
demographic subgroup. Working with libraries can help build a stronger health
communications network in communities across the country." (p. 188)

Librarians in public libraries are also cited positively in the study.

QUESTION: Are health professionals supporting their public librarians in providing consumer health information?