On balance, people report being helped by the health information they find online, not harmed. While social networking sites are not a significant source of health information for online users, they do provide a source of encouragement and offer community for caregivers and patients. One quarter of online users have looked at drug reviews online, with some 38% of caregivers doing so. One quarter of online users have watched a video about health. And a new kind of digital divide is growing between users who have access to mobile broadband and those who do not.
Those are just a few of the insights from a new survey on the social life of health information from the Pew Internet and Life Project. The results shed new light on how the online world is using the Internet to gather and share health data.
The Internet has disrupted how, where, when and what information we can gather and share about ourselves, one another and the conditions that we suffer from. Following are three key trends that reflect how the Internet is changing healthcare.
The quantified self
As Edd Dumbill observed here at Radar last year, network-connected sensors that track your fitness can increasingly be seen on city streets, gyms and wrists. Gary Wolfe has likened the growth of the quantified self to the evolution of personal computing in the 1980s.
The trend toward a data-driven life that Wolfe describes as the quantified self is no longer the domain of elite athletes or math geeks. Fully one quarter of online users are tracking their health data online, according to Pew’s survey. “The Quantified Self and PatientsLikeMe are the cutting-edge of that trend, but our study shows that it may be a broader movement than previously thought,” said Susannah Fox, Associate Director of Digital Strategy for the Pew Internet Project.
Carol Torgan, a health science strategist cited in the report, has shared further analysis of self-tracking. “Self-tracking is extremely widespread,” writes Torgan. “In addition to all the organized tracking communities, there’s a growing number of organic self-tracking communities. For examples, take a look at the diabetes made visible community on Flickr, or the more than 20,000 videos on YouTube tagged weight loss journey.”
Below, Gary Wolf delivers a TED Talk on the quantified self:
Another trend that jumps out from this report is the rise of e-patients, where peer-to-peer healthcare complements the traditional doctor-to-patient relationship. While health professionals were the number one source of health information cited in this survey, the Internet is a significant source for 80% of online users.
We’re entering an age of participatory medicine, where patients can learn more about their doctors, treatments, drugs and the experiences of others suffering from their conditions than ever before. Twenty-five percent of American adults have read the comments of another patients online. Twenty-three percent of Internet users that are living with at least one of five of the chronic conditions named in the survey have searched online for someone that shared their condition.
Online forums where people voluntarily share data about symptoms, environmental conditions, sources of infection, mechanics of injury or other variables continue to grow, and there are now dozens of other social media health websites to explore. As Claire Cain Miller wrote in the New York Times last year, online social networks bridge gaps for the chronically ill. And as Stephanie Clifford wrote in 2009, online communities can provide support for elderly patients who are isolated by geography.
“These networks provide sense of distributed community, where you can find others who suffer from your condition and support for treatment,” said Fox. “PatientsLikeMe is example of that.”
PatientsLikeMe, in fact, recently published the results of a patient-driven clinical trial in Nature, the first such study in a major journal. Fox shared further thoughts on mapping the frontier of healthcare at e-patients.net:
The online conversation about health is being driven forward by two forces: 1) the availability of social tools and 2) the motivation, especially among people living with chronic conditions, to connect with each other. Pew Internet has identified two important trends in our data. One is what we call the “mobile difference” — hand someone a smartphone and they become more social online, more likely to share, more likely to contribute, not just consume information.
The other is what we call the “diagnosis difference” — holding all other demographic characteristics constant we find that having a chronic disease significantly increases an Internet user’s likelihood to say they both contribute and consume user-generated content related to health. They are learning from each other, not just from institutions.
This trend emphasizes the link between health literacy, media literacy and digital literacy. When citizens search for information about health online, they’re presented with a dizzying array of choices, including targeted advertising, sponsored blog posts, advertorials and online forums. One area where this will be particularly challenging is in pharmaceutical information. More open data about pharmaceuticals released by open government projects like Pillbox inject trustworthy information into the Internet ecosystem, as users searching for aspirin will find. However, the United States Food and Drug Administration has still not issued any official guidance for the use of social media by the industry. Given the growing percentage of caregivers and those suffering from chronic disease that are searching for information about drugs, such guidance may be overdue.
As the role of the Internet as a platform for collective action grows, its ability to connect fellow travelers will become increasingly important. As Clay Shirky observed in January, “we have historically overestimated the value of access to information and underestimated the value of access to one another.”
A new digital divide
Internet access is information access. Citizens who are not online are by definition on the other side of the digital divide. In the 21st century, however, a data-driven life is also profoundly mobile.
According to the Pew Internet survey, 18% of wireless Internet users are tracking their own healthcare data, twice as many as those who do not have a wireless-enabled device. Open health data can spur better decisions for mobile users if they have access to a smartphone or tablet and the Internet. Without it, not so much.
“The difference that we see is in the mobile space,” said Fox. “It’s a younger demographic, and connected to that it’s more diverse. When you look at who is accessing the Internet on their smartphone and has apps, you’re likely to see a more diverse population. That’s the promise of mobile health: that it will reach different audiences. And yet, these are not the audiences that are in the most need of health information. If you look at the numbers of people with disability or chronic disease, mobile is not closing that gap.”
Fox spoke about the promise of mobile and the new digital divide at Transform 2010:
It’s no secret that the ability to pay for data plans and smartphones is correlated with socioeconomic class status. Access to hardware may change as inexpensive Android devices continue to enter the market. According to ComScore, as of January 2011, 65.8 million Americans owned a smartphone, out of a total of 234 million users ages 13 and older. If 20% of those users switch over the course of this year, smartphone penetration will be just shy of 50%. That doesn’t address the needs of those without access to broadband Internet. Simply having a smartphone and connection, however, doesn’t result in the information literacy and health literacy needed to apply these tools.
That’s a lot to ask of citizens, who will need well-designed healthcare apps to help them make sense of the data deluge. Given spiraling healthcare costs, however, the future of healthcare looks like it’s in the palms of our hands.