There is a great number of Facebook groups for different diseases. There, people with the same diagnosis can learn from one another, and share tips on research, diets and medication.
But where are all the professional opinions?
“The academic environment in the field of health is very rarely present on social media. I think that is due to wrong priorities, says Elia Gabarron,” a researcher at the Norwegian Centre for E-health Research.
She is the editor of a new textbook, which is a collection of knowledge from around the world on health through social media. She thinks there might be a lot to gain, especially for health authorities, if they prioritize more information and professional guidance concerning disease on social media.
“This applies in particular to chronic diseases and rare conditions," says Gabarron, who is originally a Psychologist.
In Norway, over three million citizens are on Facebook. This means that almost the entire population has an account.
“It is a fantastic opportunity. Moreover, at present it seems that most of what is shared in the health groups is proper information. The groups often have their origin in a special interest organisation.”
Gabarron is well aware that using social media when seeking medical advice is not without its risks. There is, for instance, a chance that misinformation about disease treatment is spread through these channels. However, she isn’t too concerned:
“There is such a thing as collective intelligence. Even if you do not become suspicious of alleged research or unfounded health advice, someone else in the group will. However, the best scenario would be if health professionals also participated with professional and relevant information in such groups.”
Patients with a chronic illness meet their doctor on average once or twice a year to discuss the development of the disease, according to Gabarron.
It can be difficult to remember to ask all the questions you might have during the few minutes you have with your doctor, and worse yet it’s hard to understand and remember the answers you got.
“Many of us turn to Google when we get home to better understand what the doctor actually said. Having access to a network on Facebook with people in the same situation, means you can get answers from people with experience, and thus become safer and better at mastering your own disease.”
Researchers do not think there will be more time with the doctor in the future. That's why it is important to define how we, by using technology, can enable people to make more wise choices about their health without consulting the doctor.
Gabarron is concerned that the medical health professionals and health authorities are neglecting the need for information, meanwhile, social media are increasingly being used for health issues.
In 2013, she participated in establishing the website www.sjekkdeg.no [“get yourself tested”], giving young people information about sexually transmitted diseases.
“We saw that social media and especially Facebook gave a great number of visits to the website, although our Facebook page did not have as many likes,” she says.
“That probably has a natural explanation in that such pages are not the ones you want to promote if you are friends with mom on Facebook. However, the youngsters evidently used the page to be forwarded to more information.”
On sjekkdeg.no youngsters could play their way to greater knowledge. Because of this, the young people spent a lot of time on the website, and thus probably picked up some knowledge about venereal diseases and how to avoid becoming infected.
“The need to get out more information is huge. Chlamydia incidence is twice as high in Troms and Finnmark as in the rest of Norway. The results from Northern Norway are actually among the highest in the world, and young people are most at risk,” says the researcher.
“The disease is sinister because it can make you sterile if not treated, and girls are at particular risk for this. An increasing number of couples who need to consult fertility clinics for assistance to have children are there because they have become sterile as a result of undetected chlamydia,” the researcher explains.
In rare cases, the venereal disease may also lead to cancer.