I just published a quick take on who doesn’t gather health information online, including the stark finding that three-quarters of U.S. adults who have less than a high school education say they do not get health information online.
One survey question I cited dates back to 2002, but I think it is still interesting. Here’s the text of the question:
Earlier, you have said that you have not used the internet to search for health or medical information. Thinking about the reasons you do not go online for such information, is it because…
much of the information on the internet cannot be trusted?
there are not any health or medical issues that concern you right now?
you are satisfied with the health and medical information you get elsewhere?
you would not know where to start looking for such information online?
The results can be found in the 2003 report, Internet Health Resources, under the heading: Why some internet users have not searched for health information.
How would you update that question? Are there other reasons we should list as options if we put it into the field again?
Add something about health literacy/reading/language barriers. Also, what if they don’t have access to a private computer or a computer at a time that they want to look up the information?
Hmmmm. Add “there’s too much information– I find it overwhelming to search alone?” (e.g. in Migraine, especially when much of the info is accompanied by discouraging and/or horror stories) or, “My SO/kid/other does it for me?” (cancer, Alz, PD, macular degeneration)
And maybe add/modify the first one to “it’s hard to identify which sources are trustworthy.” Think folks know there is legit information out there, but they don’t know how to vet it.
My doctor told me to stay off the internet
btw, is there some way to separate people who have a computer, people who don’t have access to one, and people who don’t but use one elsewhere, e.g. library, friend, or hospital? I’m thinking about Emory’s study of safety-net patients who don’t have computers but are, in many cases, doing online things.
Great question! It is so critical delve further into barriers and perceptions of this cohort to make sure we design and intervene in ways that mitigate disparities in care delivery..
Taking Judy, Katie and Dave’s comments further..
Consider getting more granular around what access means; identify if the source of access has an impact on willingness to go online; identify if “search” may be known/used at the level of email; differentiate between getting information, understanding information, and feeling it is credible..
People have intermittent access (many VA patients I see say this), with no dependeable source. A question such as, Do you have a regular place to go online, or does this happen on & off?
Lack of a dependable source may affect how people feel about using the internet. People who access at a friend/family home may not consider it “their” access…and feel uncomfortable (are they limited by time? guilt while using other people’s computer? are they concerned about privacy?)
Many people go online to use email, but maybe there is an awareness or skill barrier to using search. Maybe sking about something not related to health – Do you know how to search to find ___? might get at the fact that people don’t know how to search, even if they could?
Lastly, questions that ask about sorting through the information they think is helpful might get at barriers that are more “proximal” to whether or not they believe the information.
Also the idea that no one ever suggested it – health professional, friend, etc.
Your comment reminded me that Pew Internet has explored how people with low or no internet access gather information when making major decisions.
Here’s our 2007 report:
Information Searches That Solve Problems
An excerpt of the summary:
“A major focus of this survey was on those with no access to the internet (23% of the population) and those with only dial-up access (13% of the population). This low-access population is poorer, older, and less well-educated than the cohort with broadband access at home or at work. They are less likely to visit government offices or libraries under any circumstances. And they are more likely to rely on television and radio for help than are high-access users.”
Thanks so much! I love the suggestions so far. One I’d add (as long as we’re in blue-sky mode) is an open-ended response option so the respondents can tell us their reasons in their own words.
Great suggestions so far. What struck me most was how the original questions are as pertinent today as they were in 2002.
Another detail that I didn’t include in the post:
14% of U.S. adults have not completed high school. They are among the least likely to have internet access – just 38%, compared with 64% of adults with a high school diploma.
I often point out that the “grey gap” or generational divide in internet access might be ameliorated by caregivers – younger relatives and friends who can go online to gather information on behalf of their offline loved one. I wonder if that is as true among people with lower levels of education? My hunch is that the social networks (here I’m talking offline networks) are pretty segregated by educational levels. An 80-year-old with a college degree is probably more likely to have friends and family with the same level of education — and therefore a much higher chance of obtaining second-degree internet access.
This is more evidence that Judy, Katie, Dave & Sue’s suggestions are spot-on regarding the role of intermittent access, search skills, etc.
Building off what Dave and others have suggested, could you flip the line of questioning and ask something along the lines of:
“What would drive you to look online for health information?
a) your doctor’s office suggested to ‘use the internet’
b) your doctor’s office suggested to “use specific sites”
c) your doctor’s office provided a custom portal that supported your search (and collected information that supported your care)
d) your doctor’s office provided you a computer in the office to support your search
e) your community (church group, PTA) offered online health training courses
I am sure there are better answer options and better wording, but I hope this makes sense…
All the best,
Oo, Brian, Like Like Like! (to use the Facebook meme…)
Food for thought: I think the issue is desire. People in America will get comptuter access if they want to.
Even people who live in dirt shacks in India and Nepal have figured out how to hitch a ride into town and use the computers in Internet Cafes. Just saying…
Jonena, that’s tied up in the Emory study I noted above. Desire is a key factor, but the preliminary results seem to suggest that they also need to believe there’s *reason* to try. The ones at PAM level 1 believe it’s useless – nothing they can do that would make any difference.
The combination – desire plus a feeling that you can make a difference – does seem to lead to action.
Responses 1 and 4 in the original survey might be characterized as trustability and findability of information. I think that understandability is another key aspect (though this, like the others, is probably as much a reflection of the information seeker as the information itself). Others have already commented on the importance of education; while I hope that education level may be correlated with critical thinking skills, it might be worthwhile to explicitly ask about [presumed] understandability during the next survey, so that we might have a clearer sense for whether online health information non-seekers believe that information on the internet cannot be found, cannot be trusted or cannot be understood.
Thanks, Joe! Wise counsel. I’m itching to explore what people do when they’re faced with information they know they need to understand, but they either don’t have the education or the emotional capacity to spend time studying it. Pew Internet’s quantitative and qualitative research have pointed to the role of caregivers – people who tap a trusted friend or relative to be their information sherpa, for example. But how widespread is this? And how effective?
Jane Sarasohn-Kahn wrote a nice take on some fresh data related to health information seeking:
Her point is, essentially, that disparities continue to exist and they are related not only to people’s (potentially declining) interest in gathering health information but also to the economic hard times. If you are on a tight budget, you cut print magazine subscriptions, internet access, and other resources.
Here’s the new study from the Center for Studying Health System Change, an excellent research organization: