If you have been diagnosed with a condition—any condition—you might be tempted to hop online and join other patients in a discussion group. But you can do much more online. Today, social networking is changing the look and feel of patient support Web sites—and providing much more help for groups of people with the same conditions.
The “old style” patient support groups, forums and discussion boards enable patients to exchange a great deal of information online—interacting…asking questions…providing opinions…and sharing emotions.
But several newer Web sites enable patients to do even more—such as interact with health professionals…build communities for lesser-known conditions...and share medical tests with doctors and researchers. These patient-to-patient/patient-to-doctor exchanges are known as “participatory medicine,” because they give patients a chance to interact and work with various knowledgeable health professionals.
Sites such as HealthBoards.com, DailyStrength.org and Inspire.com enable patients to choose from hundreds of groups, including ones for medical conditions, mental health problems and life situations, such as loneliness or parenting.
Here are some highlights…
Easy-to-navigate site with about 899,000 registered members and 6 million monthly visits.
Offers hundreds of message boards on health issues, from abuse support and acid reflux to West Nile virus and women’s health.
There is a section where you can ask doctors questions.
Offers more than 500 support groups on topics ranging from fibromyalgia and Crohn’s disease to smoking cessation and the emotional pain of divorce.
Members can send one another “virtual hugs” for support.
Covers hundreds of conditions, both common and rare.
Has a high level of user “engagement.” There are about 1,600 members in the encephalitis community. This is a large group considering that the condition, characterized by swelling of the brain, is rare.
Many of these sites enable patients to start their own groups. This happened, for example, to a group of young women with a rare heart condition called spontaneous coronary artery dissection (SCAD) who found one another on Inspire.com. Since most doctors don’t see many cases of SCAD (which occurs when the layers of the coronary artery separate, causing blockage and sometimes a heart attack), there wasn’t much research in the area. That changed when the “SCAD Ladies,” as they are known, inspired Mayo Clinic researchers to conduct the largest-ever SCAD study.
Doctors are taking note of how the Internet can be used to gather patients for research.
PatientsLikeMe.com is a for-profit Web site that brings together people with the same diagnosis who share data, including their medical test results, blood values, bone density or whatever information is appropriate to their disease. The idea behind it: Sharing health information greatly benefits patients.
The site, which began in 2004 as a resource for people with amyotrophic lateral sclerosis (ALS), is now available to patients with 1,200 health conditions. PatientsLikeMe.com has its own team of researchers and collaborates with researchers from other institutions, such as Oxford University and Johns Hopkins University, among others. Patients who participate on this site realize that they are sharing their medical information (photos and hometowns also are used), but they believe that the potential medical benefit outweighs any loss of privacy.
Since there are so many online patient support groups, how do you know which is best for you? And what can you offer by visiting the site?
Test out a few Web sites. Search through several different online support groups to get a good idea of the comments and replies that are exchanged. Ask yourself if you are comfortable with the tone of the conversation and whether the topics match your needs. Note too that there might be more people and a livelier discussion about your condition on one site than on another.
Offer support to others. Web site users say that it feels good to be able to share their medical information and to help others.
Important: Always verify information that could affect your health. If you find out about a new treatment online, be sure to consult your physician before trying it.
Source: Trisha Torrey, a patient advocate in Baldwinsville, New York. She is the patient empowerment expert for About.com and also runs the Web site EveryPatientsAdvocate.com. She is one of the original members of the Society for Participatory Medicine.