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Posted by Dr. Claire McCarthy December 4, 2013 01:32 PM
We are getting seriously social about our health--especially those of us with chronic health problems--and it's time we not just realize this, but make the most of it.
Last week Pew Internet released yet another fascinating study about how Americans use the Internet. According to their interviews, adults with chronic conditions are more likely to look up information about medical problems, treatments and drugs than adults who don't have any conditions. They are also more likely to read online reviews about medical treatments (and providers)--and more likely to read or watch information about the health experience of other people.
People with chronic conditions are also more likely to check in with their doctors about what they find on the Internet. When people with chronic conditions "self-diagnose" from Internet info, 60 percent check that diagnosis with a doctor, as opposed to 48 percent of healthy people who self-diagnose. Part of that reason may simply be that they see their doctor more often.
You could argue that they don't need to self-diagnose if they see their doctor often--but it doesn't bother me at all. There is so much information out there that can be incredibly helpful to patients and families, and it's simply not possible for me to know all of it. People come to me all the time with information they've found online. Sometimes it's something brand new or different that I didn't know about, and we learn together. Sometimes it's something I do know about that I don't think is a good idea--but by talking about it, we still both learn: they learn more about their condition, and I learn more about them and what they think and worry about.
The Internet does something else I can't do: it connects people. As much as I'd like to connect people with the same diagnoses, between patient confidentiality and not knowing who wants to connect (or would connect well), it's not something I can do easily. And yet these connections and relationships can make all the difference for families facing tough diagnoses.
For this, along with the incredible access to information it offers, I am grateful to the Internet; it helps me take better care of patients and families. That's why I think we need to do a better job of making the most of it. We should be suggesting sites, suggesting searches, suggesting questions to answer together.
There are other ways we need to make the most of it, too. One worrisome part of the study was that overall, people with chronic conditions were less likely to be on the Internet than healthy people--and that's after controlling for things like age and income. The researchers called it "the diagnosis difference": for some reason, some of the people who most need the Internet aren't using it. We need to understand this diagnosis difference, and fix it.
We also aren't using technology anywhere near as much or as well as we should. While the study showed that people with chronic disease were more likely to track things about their health (like their weight, blood pressure or blood sugar), and said that the tracking helped them, most of them either track with pencil and paper (43 percent) or keep track of things in their heads (41 percent). A measly 4 percent use apps, and the same percentage use a computer or spreadsheet.
Given what tech can do, this is a real shame. Those pieces of paper tend to stay at home on the kitchen table instead of making it to my office, and we all know that information doesn't always stay perfectly in our heads. I would love to do more prescribing of apps, but I don't know enough about what's out there to do it. Just the other day, I wished I had a good app I could recommend for tracking headaches (does anybody know one?)--but didn't have time when I was with the patient to search for one. We have the capacity for patients to track things in real time and send the info to their doctors, which could revolutionize the care we are giving, especially for patients with chronic conditions; we just need to make the technology more accessible, both to patients and to doctors.
This our new reality: health, and health information, is moving online and getting social. The sooner we get our act together and make the most of it, the better.
The author is solely responsible for the content.
About MD MamaClaire McCarthy, M.D., is a pediatrician and Medical Communications Editor at Boston Children's Hospital . An assistant professor of pediatrics at Harvard Medical School and a senior editor for Harvard More »
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