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People use Facebook to learn about their disease


- In the future, we will be going less to the doctor, and rather use social media to find out what is the matter with us, says a researcher. She believes health authorities are not paying attention in class.

You cannot remember what the doctor answered to your question. Or you did not understand it. So you ask the Facebook group for those with the same disease - you might get better assistance there. (Photo: Colourbox)

You cannot remember what the doctor answered to your question. Or you did not understand it. So you ask the Facebook group for those with the same disease - you might get better assistance there. (Photo: Colourbox)


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.

- 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 has collected 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 laid the groundwork for 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.

Sleeping in class 

Gabarron is concerned that the medical health professionals and health authorities are sleeping in class, while social media are increasingly being used for health issues. In 2013, she participated in establishing the website sjekkdeg.no, 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.

Almost everyone is on Facebook

In Norway, over three million citizens are on Facebook. This means that almost everyone has such 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.

She does see the risk, but is not afraid that social media might spread misinformation about treatment of disease.

- 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 of all would be if health professionals also participated with professional and relevant information in such groups.

We google and ask following a visit to the doctor 

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.

During the minutes the meeting goes on, it may be difficult to remember to ask all the questions, and not least understand and remember the answers one gets.

- Very many turn to Google when they get home to understand better what the doctor has said. Having access to a network on Facebook with people in the same situation, allows you to obtain 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. It is rather about how we, by using technology, can enable people to make more wise choices about their health without consulting the doctor.

Playing their way to knowledge 

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.

May warn of epidemics 

In the new book about health on social media, 21 international experts write about different topics. It is related to everything from how social media can give patients more power, how hospitals are using social media, to how social media can warn of epidemics before they erupt.

- By using search words and different algorithms, it is now possible to find out what people are saying about health on social media. You can find out if they express joy or concern about different topics.

Gabarron now wants to use these algorithms to survey what diabetes patients are seeking assistance with via social media, based on how they express themselves.

- In the “sjekkdeg” project, we assumed that the reason for high incidence of chlamydia was insufficient and unsatisfactory information. Now we want to survey what diabetes patients need assistance with, in order to subsequently facilitate the development of new tools for assistance and guidance, says Gabarron.   Elia Gabarron at the Norwegian Centre for E-health Research is one of the Managers of an international network conducting research on health and social media (Photo: Rune Stoltz Bertinussen, Krysspress)

Reference: 

Syed-Abdul S, Gabarron E, Lau, AYS (2016). Participatory Health Through Social Media. Elsevier: Academic Press 

Elia Gabarron at the Norwegian Centre for E-health Research is one of the Managers of an international network conducting research on health and social media (Photo: Rune Stoltz Bertinussen, Krysspress)

Elia Gabarron at the Norwegian Centre for E-health Research is one of the Managers of an international network conducting research on health and social media (Photo: Rune Stoltz Bertinussen, Krysspress)