As of December 2007, 75% of American adults use the internet, 75% own a cell phone, and 54% have a high-speed internet connection at home (download charts here). Seniors, those with less education, and those living with a disability or chronic disease lag behind other adults on all three fronts. Further, a more in-depth survey found that only 8% of American adults are living a digital life and indeed, “half of all American adults are only occasional users of modern information gadgetry.” (Take the quiz to see where you fit.)
I think there are significant health implications to the degrees of technology access in the U.S.
When you hear the phrase “2.0” you are probably hearing someone talk about an online world that is familiar to “Elite Tech Users,” who make up 31% of all adults. They have lots of gadgets and they like them. For them, the internet has changed from being slow and stationary to being fast and mobile. Elites don’t just surf through the online world, they shape it.
Web 2.0 is less familiar ground for “Middle-of-the-road Tech Users” and those with “Few Tech Assets.” They might benefit from the resources made possible by the participatory internet, but they may not have the skills or the desire to do so. How will these people fare if the best health care is only available to those who are willing to expand beyond traditional health information sources like doctor’s appointments and print media?
Concurrently with the degree of technology access the issues of digital and health literacy probably help explain why certain segments of the US population are able to use and benefit from high quality internet health resources. So, a good question to answer is: Is there a correlation between the technology access status and online health litteracy?
Tech literacy is definitely a concern, as is health literacy (much less basic literacy). Eszter Hargittai, a professor at Northwestern, has done some interesting research related to internet user abilities:
http://www.eszter.com/research/
And while searching for this link I found Eszter’s blog, which links today to this CNN article, which is making the rounds for all the right reasons:
Tips for savvy medical Web searching
http://www.cnn.com/2008/HEALTH/02/21/ep.web.sites/index.html
Finally, here is a September 2006 report by the National Center for Education Statistics, “The Health Literacy of America’s Adults.”
http://nces.ed.gov/pubsearch/pubsinfo.asp?pubid=2006483
> how will these people fare
That’s a great, great question. In my day job I’ve been digging into “what is Web 2.0,” and yours is the next big question that emerges in the health arena, but it was just over my horizon and I hadn’t seen it yet.
For one thing, I’m getting my buns in gear by publishing my story (thanks Gilles) on ACOR, to give people a case history of a very different approach to cancer, incorporating both e-patient methodologies and an overall empowered outlook.
But in my experience, people (including me!) don’t get their buns in gear about e-health until a crisis arises. Then they have all the motivation and time in the world for it. The next question becomes, when that crisis arises, will they (and their support circle) have access to it, and even if they do, will they KNOW about it?
That’s where awareness comes in. Let’s think about some scenarios of different user types (“personas,” as they’re known in Web thought circles) and the sequence of events as they enter their own crisis and face the “What do I do now??” question.
Dave comment is exactly right. We should come up with a manual on how to become an e-patient. A wiki would be the most natural way to get this going since such a manual can only be based on e-patient experiences.
We already know what are all the various types of internet users and of online community users. Creating scenarios of health empowerment for these various categories should be absolutely doable.
> We should come up with a manual on how to become an e-patient.
Aw, gee, G. 🙂 You’re stealin’ my ideas. Just tonight I was telling friends that this is what I want to work on next. Well, sorta. It wasn’t quite that – my specific interest is on an overall context education for the newly diagnosed, and “how to become an e-patient” would be a vital part of it.
Back in October I wrote to the Kidney Cancer Association, a very good group, which had just put on a conference that was supposedly patient-facing but which despite the best intentions was basically a patient-facing presentation of doctor-oriented information. I emphasize that it was with the best of intentions but it missed the mark. I proposed a second, non-medical track, and volunteered to help develop content. It’s all things I wish I’d learned right at the outset. Here’s the outline I proposed.
• Cancer is no longer a death sentence.
• The importance of your attitude and feelings
• Understanding the statistics you read
• Creating a support community of your family and friends
• Taking care of the caregiver
• Online resources—not just medical information, but social resources too
• Advocating for your own care
I fleshed it out later but haven’t taken any action on it yet. Obviously now that I know about the e-patient principles, they’d play a big role in it – but I think it’ll have much more power when couched in a larger empowering (and practically enabling) context.
Dave, I urge you (and anyone else interested in designing for patients) to read “Studying Those Who Study Us” by Diana Forsythe (Stanford, 2001).
Chapter 7, “New Bottles, Old Wine: Hidden Cultural Assumptions in a Computerized Explanation System for Migraine Sufferers,” is particularly salient to this discussion. Forsythe writes, “Based on the fieldwork, I compiled a list of about 200 queries to which migraine sufferers wanted to know the answers. The restriction of the system’s explanatory frame to the patient summary made it impossible for the system to address most of these questions.”
One of the top questions asked by patients but not answered by the computer: Are migraines going to kill me? Experts might dismiss it as a silly question, but it’s not silly to someone experiencing a debilitating migraine.
All right, I’ll be weasely (but honest): how big is that book? The combination of what I’m already doing in blogging (plus my newly revitalized life) leaves me with “too little time” (I know that’s just a cliche) to squeeze something more in – I’m already going to have to cut things out to start using my new (used, but not by me) exercise bike.
Which is to say, is this a tome that requires emotional commitment?
Chapter 7 will get you far in grokking Forsythe’s work — and it’s available on Google Books if you want to skim it (that’s how I captured the quotes).
The whole book is 240 pages and I found it quite readable (however, I studied anthropology so I’m into ethnography). Like Tom’s e-patients book, it was completed after Forsythe’s death by a group of friends and colleagues.
Susannah! Holy cow, I’ve been behind in my reading. I had no idea there was an “empowered patient” person at CNN. Got some homework to do tonight!
(btw, not to be too “e” about it or anything, but I’m blogging while sitting in my oncologist’s office waiting to be seen next. Don’t we love hospitals that have free wireless?)
thanks for the great information…