health professionals are still the first choice for go-to information about health concerns
If information is power, then the internet has enabled a huge power shift in medicine. Fifteen years ago, if you wanted information about a health concern, you had to go to a doctor. Physicians had all the information and all the power.
With the advent of the internet, the average person gained easy access to health information, including medical journals. It’s important to remember we don’t have the medical expertise or scientific training to interpret much of the information, but we do have access, which provides the opportunity to ask questions. With the rise of social media, we gained access to another powerful source of health information: other people who were experiencing the same issues. For rare disease patients, who will probably never meet another patient in real life with the same rare disease, this was a seismic shift.
The Pew Internet & American Life Project provides valuable research on how Americans are using the internet, in particular around health, which we’ve written about previously. Their latest study is The Social Life of Health Information, 2011.
Health Professionals Are the First Choice
According to this study, health professionals are still the first choice for go-to information about health concerns, but online resources (such as WebMD) and social media options (such as blogs and online support groups) represent a huge source of health information in the U.S. According to the study, 80% of internet users have used the web to research specific health issues or treatments. For a rare disease patient whose doctor may have never heard of his or her condition, the web is critical to get information and to find others for support.
The survey finds that, of the 74% of adults who use the internet:
- 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.
Social Networking Usage
Of those who use social network sites (62% of adult internet users, or 46% of all adults):
- 3% 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.
This data aligns with other studies that have recently explored these topics.
As these stats show, social media users for health information are a select population and by no means represent the “average” internet user. The Pew report said it best: “There are pockets of highly-engaged patients and caregivers who are taking an active role in tracking and sharing what they have learned.” Rare disease patients and caregivers have found comfort, support and information in connecting and sharing on the web, and they are certainly pioneers in what could become a mainstream activity in the years to come. These rare disease patients are taking a participatory role in their healthcare and empowering themselves with information found online from news sources as well as other patients like them.
What do you think of this latest data from Pew Internet?
(Image courtesy of Alessandro Reginato on Flickr).
- 07 June 2011 at 6:06pm
- Eileen O'Brien 07 June 2011 at 7:06pm
- Becca Vermeulen 30 August 2012 at 9:08am
- Personalized Health Experiments and Rare Diseases | SIRENSONG 30 June 2014 at 12:06am
- How The Internet Helps Rare Disease Patients | Patrick Bouillaud Blog 05 December 2014 at 9:12am
- How The Internet Helps Rare Disease Patients
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