March 24, 2010

Chronic Disease in Data and Narrative

For the past 5 months I have been immersed in data and narrative about chronic disease. The result, “Chronic Disease and the Internet,” is a report sponsored by the Pew Internet Project and the California HealthCare Foundation. We find that living with a heart condition, lung condition, high blood pressure, diabetes, and/or cancer has an independent, negative effect on someone’s likelihood to have internet access.

The people most in need of the internet’s in-depth information are among the least likely to have access to it.

The report shows that 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.

And yet, those who are online have a trump card. They have each other. This survey finds that having a chronic disease increases the probability that an internet user will share what they know and learn from their peers. They unearth nuggets of information. They blog. They participate in online discussions. And they just keep going.

Here are some questions and answers about the report:

What do you mean by “independent, negative effect”? Are you saying chronic disease causes people to stay offline?

Phone surveys allow us to paint with a broad brush, but they are limited in what they can tell us about a population. Living with a chronic disease is associated with being offline — we’re not talking about causality. If you look at the raw numbers, it’s obvious that people living with chronic disease are less likely to have internet access (62% go online vs. 81% of adults reporting no chronic conditions). What we did (really, what my fantastic colleague Kristen Purcell did) was run statistical regressions to isolate all the demographic factors. Holding everything constant — education, age, income, etc — chronic disease has an independent effect on someone’s likelihood to go online.

Wait, what?

There are multiple forces at work when we look at internet adoption and use. Having a college education, living in a household with $50K or more in annual income, being under the age of 70, being white, and not being diagnosed with any of the 5 conditions we included in the survey (heart, lung, HBP, diabetes, cancer) are all associated with a greater likelihood of having “traditional” (ie, not wireless) internet access.   You can see that in the “thermometers” I’ve posted and need to update: the vast majority of college grads in the U.S. have internet access.  But it’s not that white people are more likely to have finished college or that college grads are likely to make more money or that the college grad group is younger — holding all those other variables constant, education has a strong, independent effect on someone’s likelihood to have internet access.

By the same token, chronic disease has an effect, but not as strong as education.  Again, it’s not just that the current population of people living with chronic disease are older, are more likely to be black, or are more likely to live in lower-income households — holding all other variables constant, having one of the 5 chronic conditions named in the survey has an independent effect on someone’s likelihood to have internet access.

Thanks, now I’m depressed. Any good news for people who think the internet can help people?

If someone who is older, less-educated, and living with multiple chronic diseases does manage to break free of those anchors and get online, they are just as likely as everyone else to take advantage of online health resources. Once someone is online, having a chronic disease seems to have a buoying effect on their online health exploration and utilization.

I’m a big fan of metaphor and simile to get my points across — what’s the image that resonates with you? Anchors & buoys? Magnets of varying strengths, pulling in different directions? A hot-air balloon, adjusting to wind and gravitational pull? Please add your ideas in the comments.

Why did you include quotes from patients?

Pew Internet recognizes that we often need to supplement our quantitative analysis with qualitative data to fill out the portrait of a group or activity. My colleague Amanda Lenhart has the challenge of tracking teen use of the internet, for example, and does a beautiful job of incorporating focus group quotes in her reports. I’ve used quotes in previous reports about health, such as my 2007 report “E-patients With a Disability or Chronic Disease” and my 2003 report, “Internet Health Resources.” I have been deeply moved by the stories told by patients and caregivers in each of the qualitative surveys we have conducted. My best insights about the social impact of the internet come from reading these narratives.

Gilles Frydman and I have been talking about the power of narrative in connecting patients with health advice. I’d love to hear what other people think about the power of data and the power of narrative. Of course we don’t have to choose, necessarily, but I think the field of participatory medicine needs to recognize the difference between the two approaches. Which one can scale? Which one is most helpful for this or that condition?  Someone with a life-changing diagnosis has different information needs that someone with an ongoing chronic condition, for example.  Which one reaches this or that individual?  Which one leaves this other individual cold?

That’s enough for now — please read the report (OK, at least read the summary) and tell me what you think: join the conversation on e-patients.net.