Patients take the plunge into Web 2.0

Patients take the plunge into Web 2.0

January 5, 2009

All over the world, million of users are generating their own health information on the Internet, both on blogs and on YouTube.

A new survey shows that patients feel that they learn a great deal in this way, and that they can trust the information they find.

The Web 2.0 phenomenon has arrived in the health sector in earnest, and users are participating to a growing extent in efforts to provide information on the Internet.

Patients with a variety of diseases such as diabetes and multiple sclerosis blog about their illness and post videos to YouTube. A quick search on the website finds 15 800 matches for the search term "diabetes", for example.

And patients say that they find this very useful. Have we come to a crossroads where patients take more and more responsibility for their own health, or is privacy going over the precipice when no fewer than 86% of the respondents have posted their diagnosis on the Net?

Much to learn from other patients

Together with researchers from the Norwegian Centre for Telemedicine, the University of Tromsø, and the Technical University of Valencia in Spain, Luis Luque from Norut and Tromsø Telemedicine Laboratory has conducted a survey to find answers to these questions.

The study is small, as only 29 patients responded out of the 122 who were asked, but a full 96% of the respondents read health information generated by other patients, and feel that it is useful and informative.

The majority also find that reading other people's stories is a source of support. And the information is useful when they prepare for doctor's appointments and in helping them to take better care of their own health.

It is also interesting that 64 % of patients say that they had discussed what they found on the Internet with their doctor, and a third of the patients said that doctors were positive to this approach.

Half of them had not formed an opinion about the phenomenon, and no patients responded that their doctors were negative.

Change their own treatment programme

But the study also shows that the new way of sharing information poses new challenges. 28% replied that they believed that some of the patient information on the Net was not correct, and that this was because it had been posted by "false patients".

In spite of this, most patients had used health information from other patients to change their own treatment programme. In addition, many patients post both pictures and video of themselves on the Net, as well as diagnoses, treatment, and information about which doctor they use.

"Internet users often create their own netiquette for what information to post and how to relate to others on the Net. But we must also work on promoting ethical guidelines among patients," says PhD student Luis Luque.

Video presented by Luis Luque at Medicine 2.0:

Watch the video at YouTube here.

Contact person

PhD Student Luis Fernàndez Luque, Norut Tromsø.

Facts about the study The researchers found 122 patients via Internet pages in English, including Google, various patient portals, and the links they found there. Of these, 29 responded to the study and almost all had higher education. 96% replied that they had learned from what others had communicated about their illness on the Net, while 93% felt that the content provided by patients had been psychologically supportive. The survey was presented at the conference Medicine 2.0 in Toronto, Canada on 17 and 18 September 2008. You can download the presentation from this website.