More than half of e-patients living with chronic disease consume user-generated health information.
The Pew Internet Project has tracked the internet’s role in decision-making, finding that many people use online resources to compare their options.28 Social media’s influence is on the rise as more and more people look for advice from peers as well as experts.29 The idea is that, if people can pool knowledge and learn to track their own health metrics, such as their weight or cholesterol counts, they can make better choices and have better health outcomes.30
Among e-patients living with chronic disease:
- 37% have read someone else’s commentary or experience about health or medical issues on an online news group, website, or blog.
- 25% have consulted rankings or reviews online of hospitals or other medical facilities.
- 25% have consulted rankings or reviews online of doctors or other providers.
- 22% have signed up to receive updates about health or medical issues.
- 13% have listened to a podcast about health or medical issues.
Overall, 57% of e-patients living with chronic disease have done at least one of the above activities. These findings mirror patterns in the general population: e-patients living with chronic disease are about as likely as the general population of e-patients to tap into user-generated health content. However, statistical analysis shows that when age, education, and type of internet access are controlled, living with chronic disease increases the likelihood that an internet user will consume user-generated health content.31
In the modern world, blogs and other online meeting grounds provide a way for people to share information, emotional support, and practical advice.32 This is the 21st century version of the age-old instinct to seek solace in the community. Thomas Jefferson captured the sentiment in a letter to a friend in 1786, “Who then can so softly bind up the wound of another as he who has felt the same wound himself?”33
On a more practical level, one e-patient wrote, “I was having problems sleeping [because of] hip pain. Through this site I received info about proper ways to set up my bed and since then have been sleeping so much better.”
Another respondent wrote, “I read the Gluten Free Forum daily for about a year before I really got my celiac disease under control and felt fully informed. You can’t call your gastroenterologist everytime you buy a new product.”
By contrast, another e-patient does not find the community aspect of online health information to be useful, writing, “I don’t find chat rooms helpful because most people are sharing how horrible they feel and I am beyond that. I have bad days but I feel dragged down when I whine about them or listen to others talk about their problems with doctors, family, etc. I don’t have those problems.”
One in five e-patients living with chronic disease create online health content.
Among e-patients living with chronic disease:
- 7% of chronic e-patients have tagged or categorized online content about health or medical issues.
- 7% have posted comments, queries, or information about health or medical matters in an online discussion, listserv, or other online group forum.
- 6% have posted a review online of a hospital.
- 5% have posted a review online of a doctor.
- 4% have shared photos, videos or audio files online about health or medical issues.
- 6% have posted comments about health on a blog.
Overall, 20% of e-patients living with chronic disease have done at least one of the above activities, which matches the general population of e-patients.
Despite the fact that only a subset of chronic e-patients take part in these activities, it is worth noting once again that, when other demographic factors are held constant, living with chronic disease increases the probability that an internet user will contribute to the online conversation. Specifically, chronic disease increases the likelihood to work on a blog, to post comments on a blog, or to contribute to an online discussion, a listserv, or other online group forum that helps people with personal issues or health problems.
One e-patient wrote, “I spend a lot of time looking for information on the internet. It has been an invaluable resource for me. In addition, I keep a blog so that I can keep all my information in one place. Having a rare disorder along with chronic pain, I need all the help I can get – but I do great. I have a full time job, and participate in many activities, including a half marathon in May – and many of the things I have learned have been from the internet.”
Social network sites
The tendency among chronically ill internet users to stick to the straight and narrow online carries over into other forms of social media. Social network sites such as MySpace and Facebook are becoming mainstream destinations for many internet users, particularly younger adults, but less so for people living with chronic disease.
As of September 2009, 47% of internet users say they use a social network site, up from 35% in December 2008, when this survey focused on health and health care was conducted. There has been a modest growth of interest in this activity among older adults over the last year: 15% of internet users age 65 and older now use social network sites, compared with 7% in December 2008. Therefore, the following numbers may be slightly lower than the current uptake of social tools among people living with chronic disease.
As further context, these findings are in line with the HINTS 2008 survey, which noted a strong inverse relationship between social network site use and age. Internet users between ages 18-24 years-old were 47.8% more likely to be part of a social network site than internet users age 65 and older.34
In December 2008, 25% of internet users living with chronic disease said they use a social networking site like MySpace and Facebook. Of those:
- One in four has followed their friends’ personal health experiences or updates on the site.
- One in five has posted comments, queries, or information about health or medical matters.
- One in five has gotten any health information on the sites.
- One in ten has started or joined a health-related group on a social networking site.
Seven percent of internet users living with chronic disease use Twitter or another service to share updates about themselves or to see updates about others. Of those, very few have posted comments, queries, or information about health or medical matters.
Online support groups
Eight percent of internet users living with chronic disease say they participate in an online discussion, a listserv, or other online group forum that helps people with personal issues or health problems. This mirrors the 7% of internet users who report no disease who participate in online support groups.
The National Center for Health Statistics recently found a similarly low uptake for online discussion groups devoted to health information. Three percent of adults aged 18-64 say they had used an “online chat group” to learn about health topics in the past year.35
However, holding all other variables constant in the current survey, living with chronic disease increases the probability that an internet user will participate in online discussions.
The few people who have used such groups often praise the information they find. As one person wrote, “[An] online support group helped me learn about the disease and provided comfort in knowing that my symptoms were not ‘just in my head,’ and helped me take steps to adjust to living with a chronic condition.”
Another e-patient wrote, “I live in a small town and it is helpful to be able to use the internet to find others that have the same condition as I do.”