My co-worker of 21 years, who many of my colleagues know as the Other Lisa (I am sure her fans think of me as the Other Lisa), has one of those daily calendars where each day has a new quote. In this case her calendar features the wit and wisdom of one of my favorite humor writers, Dave Barry. On May 2, 2011, the calendar offered up this particular Dave Barry sentiment:
If you ever experience a medical symptom, such as itching, you don’t need to waste time sitting in a doctor’s waiting room reading 1997 issues of Redbook. Instead you can go to the Internet, and with just a few mouse clicks, you’ll discover the reassuring truth: There might be a worm in your brain. Really. According to a medical site called Medline Plus (“Trusted Health Information for You”) sponsored by the National Medical Library AND the National Institutes of Health, itching can be a symptom of a condition called visceral larva migrans (literally, “a worm in your brain). And before I get a bunch of nasty letters from irate physicians attacking me for unnecessarily scaring people, let me note that another symptom of brain worm is—and this is a direct quote from Medline—“irritability.”
Ok, so Barry is hilarious, but this really rang a bell for me because I had just read an article about the Pew Research Center’s Internet & American Life Project, which just published a report called “The Social Life of Health Information 2011,” for which they received funding from the California HealthCare Foundation. One of the quotes from that report (not as good as Dave Barry’s, but interesting) was, “The Internet has changed people’s relationships with information. Our data consistently show that doctors, nurses, and other health professionals continue to be the first choice for most people with health concerns, but online resources, including advice from peers, are a significant source of health information in the U.S.” Among Pew’s findings, which included input from 3000 Americans surveyed (English- and Spanish-speaking), were:
- 80% of Internet users have looked online for information about any of 15 health topics such as a specific disease or treatment. This translates to 59% of all adults.
- 34% of Internet users, or 25% of adults, have read someone else’s commentary or experience about health or medical issues on an online news group, website, or blog.
- 25% of Internet users, or 19% of adults, have watched an online video about health or medical issues.
- 24% of Internet users, or 18% of adults, have consulted online reviews of particular drugs or medical treatments.
- 18% of Internet users, or 13% of adults, have gone online to find others who might have health concerns similar to theirs.
- 16% of Internet users, or 12% of adults, have consulted online rankings or reviews of doctors or other providers.
- 15% of Internet users, or 11% of adults, have consulted online rankings or reviews of hospitals or other medical facilities.
Of those who use social networking sites (62% of adult Internet users, or 46% of all adults):
- 23% of social network site users, or 11% of adults, have followed their friends’ personal health experiences or updates on the site.
- 17% of social network site users, or 8% of adults, have used social networking sites to remember or memorialize other people who suffered from a certain health condition.
- 15% of social network site users, or 7% of adults, have gotten any health information on the sites.
Wow, as they say in the business, that is a lot of eyeballs. I am guessing that computer-induced eye-strain is one of the top healthcare searches.
But back to Dave Barry’s brain worm, a particularly interesting finding to me was that despite all that Internet-surfing, only 21% of people reported being actually helped in a major or moderate way by the information they found online. Another 9% said they got minor help. In other words, 70% of the people said that online health information was no help or, in a few cases (3%) actually harmful.
Pew did a companion research project in 2010 called Chronic Disease and the Internet which further elaborates on the issue of the usefulness and or trustworthiness of online healthcare information. When a population of people with chronic illnesses were asked, “Did the health information you found the last time [you went] online have a major impact on your own health care or the way you care for someone else, a minor impact, or no impact at all?” The result? Only 1 in 6 online health inquiries has a major impact on a chronic e-patient’s healthcare or the way they care for someone else. Specifically:
- 16% of e-patients living with chronic disease say their most recent Internet inquiry had a major impact;
- 41% say it had a minor impact; and,
- 39% say their most recent inquiry had no impact.
- I think the other 4% didn’t answer but I’m not sure
In a more general question asked to both healthy and chronically ill Internet users– “Have you or has anyone you know been helped by following medical advice found on the Internet?”—59% of Internet users with chronic illnesses and 48% of generally healthy people found no utility at all from the information they found online.
This whole story feels a bit like a variation on Bruce Springsteen’s song 57 Channels and Nothing’s On, where he talks about getting a fancy tv set up with 57 channels yet he can’t find anything worth watching.
So what do these Pew data tell us?
It’s interesting, but one of Pew’s conclusions is that the Internet access gap for people with chronic illness creates an online health information gap. They report that 81% of adults reporting no chronic diseases go online, while 62% of adults living with one or more chronic disease go online and 52% of people with two or more chronic diseases go online. However, if it is true that the information found online has, at best, a minor impact, maybe this isn’t really the right conclusion. It kind of feels like the health information found on line is of such low utility that not finding it is no better than finding it. While the Pew study reports that, at the very least, people with chronic illnesses find each other on line (about 18% of respondents use the Internet to find others with the same condition), and, thus can engage in supportive social interaction, it would be a lot better if they could also find answers online, or at least a path to answers, particularly given the unbelievable volume of health information that is floating in the Internet ether.
I think that a key lesson to be learned from the Pew data is that there needs to be a better way to direct consumers to online information that they trust, that has meaningful individualized content and that is readily accessible when they need it. Just having a tidal wave of information isn’t doing anybody any good. Just for kicks I did a Google search on the term “hypertension.” It returns 41,900,000 results, 900,000 more than you get by searching “Ashton Kutcher.” Seriously. How is that helpful to anybody? I mean how much could you possibly want to know about Ashton Kutcher once you figure out he starred in Dude, Where’s My Car? And as for hypertension, just seeing a number with two commas in it made my blood pressure go up. On the other hand, you get 408 million results in a Google search for Lady Gaga, so I guess it could actually be worse.
The “killer app” in healthcare information technology for consumers has to be one that personalizes the content to the individual human being and delivers it in a way and at a time they are ready to receive it. (By the way, I think it is utterly hysterical to use the term “killer app” in conjunction with chronic illness…I doubt that those with chronic illnesses are out there looking for something to help them manage their illnesses that has the word “killer” in the title). There are hundreds of companies and entities dumping healthcare content onto the web, but few that have figured out how to make it meaningful to individuals in their particular time of need.
As a final note, I think the Pew data hold some interesting and potentially ominous facts about whether and how people will actually use their mobile phones for accessing and tracking health information. While mobile healthcare is all the rage right now, particularly in the health IT venture capital community, there are many open questions about how and whether it can be effectively used by consumers to improve healthcare or reduce healthcare costs. The Pew study found that wireless users are more likely than other Internet users to track health data online but, despite this, the numbers remain pretty low. 18% percent of wireless users in the Pew 3000-adult study have tracked their weight, diet or exercise routing online, compared with 9% who have tracked those items when they don’t have a wireless device in their possession. But if you look broadly at all adults who own a cell phone, only 9% report that they have health-related tracking “apps”. None of these data tell you anything about whether having an “app” means you are actually using it or, if you start using it, how long you commit to tracking the data. I fear that many of these applications draw people in but then get boring and dropped, like yesterday’s video game. Combining both personalization of information with health management tools that motivate long-term compliance is the name of the game. With chronic illness, long-term is measured in decades, not months, and it takes a true understanding of behavioral psychology to create tools that move the needle.
Interacting with the healthcare system is bad enough for a variety of reasons, not the least of which is that you are sick. But feeling overwhelmed by healthcare information you don’t understand, don’t believe or can’t use is enough to make one pretty irritable. And you know what excessive irritability means? Well if you look it up on Medline, it means you might have a worm in your brain.