Using the Internet for Health Information

Last week, the Pew Internet & American Life Project released a report called "The Internet’s Growing Role in Life’s Major Moments." According to their 2005 survey, people are more and more using the internet as a primary source of information when either helping someone else with a major illness or health condition, or when looking for information for their own health issues. Here are some of its key findings:

• For about a quarter of the people interviewed who had to find information about a health condition or major illness either for themselves or others, the internet played an important or crucial role in making decisions about how to deal with the problem.

• Over the three-year period from 2002 to 2005, there was an increase of 54% in the number of adults who said the internet played a major role as they helped another person cope with a major illness. And the number of those who said the internet played a major role as they coped themselves with a major illness increased 40%.

• The internet’s largest impact comes in connecting people to other people for advice or sharing valuable experiences. For about one-third (34%) of those who used the internet in a key way in a decision, the internet’s capacity to let users draw on social networks was part of the decision-making dynamic. The “social network” effect is still larger for the 28% who said the internet connected them to expert services, at least to the extent that they were able to contact specific individuals for help.

And from a previous Pew report, from which this data is drawn:

In a social environment based on networked individualism, the internet’s capacity to help maintain and cultivate social networks has real payoffs. Our work shows that internet use provides online Americans a path to resources, such as access to people who may have the right information to help deal with a health or medical issue or to confront a financial issue. Sometimes this assistance comes from a close friend or family member. Sometimes this assistance comes from a person more socially distant, but made close by email in a time of need. The result is that people not only socialize online, but they also incorporate the internet into seeking information, exchanging advice, and making decisions.

The Joslin Diabetes Center is a good example of an online community providing support to individuals with a given health condition (you can login as a guest to take a peek around). A study of the effectiveness of the Joslin discussion boards, as an example of internet-based discussion groups found that they made a big difference in the lives of many who used them:

Nearly 75 percent of respondents to the study's 2004 survey rated participation in the discussion board as having a positive effect on coping with diabetes. As one woman commented, "I have found an oasis where I can be encouraged, inspired and educated by people who sincerely understand my struggles."What's more, 71 percent of respondents stated participation helped them to feel more hopeful. One user, a representative of many, found the discussion board to be an online lifeline. "Here in Spain, I have no support," she commented. "I honestly don't know what I would do without the support I find here. It really has transformed my life and had a positive influence on the way I cope with diabetes."

If you have the information people are looking for, or if you can provide the framework on which these online communities and social networks can form around health issues, your organization can play a major role in the decisions people make about their health. But if you don't have an online presence, you won't even be part of that conversation.