By Dr Adlin Nerissa Bacon Bolaños:
This post (which is a review of an academic article) aims to provide an overview of the major research challenges in the area of health on social media. I personally call it the power of information and misinformation in social media and the web.
According to the authors of the article, there are almost as many mobile/cellular subscriptions as the number of people on earth (7 billion). More than three-quarters of them are in developing nations.
Millions of citizens are searching information on health issues every minute and also publishing content about their health. Patients are also engaging with each other in online communities, using different types of social media.
The use of social media continues to rise. Facebook is the most-used social network in the world, followed by YouTube. Curiously, the same social networks are used in diverse countries. For example, the leading social network in South Korea is YouTube, followed by Facebook. In Nigeria, Facebook, followed by YouTube and Twitter, are the most popular social networks.
The article refers to a new term called ‘Health 2.0’. The study “Definition of Health 2.0 and Medicine 2.0: a systematic review” (2010) shows that this is a developing area, and there is no consensus on its definition.
One of the concepts included in ‘Health 2.0’ is ‘apomediation’, a term coined by Dr Gunther Eysenbach, a health policy and eHealth professor at the University of Toronto. He states that when a user accesses information on the internet, he/she cuts out the ‘gatekeepers’ (like a primary-care doctor) and goes directly to the relevant source of information.
Cutting off the traditional ‘gatekeepers’ from this chain of information dispersal is a trend that’s been rising exponentially around the globe. Patients are exposed to an overwhelming wave of information and misinformation that presents a challenge for all practising physicians. I like to call this ‘Dr Google’.
On the positive side, in the past few years, patients have become the main actors in ‘Health 2.0’. This has lead a true revolution in healthcare management. These e-patients achieve better health outcomes thanks to being connected with and sharing experiences on social networks. Previously, their health depended solely on the capacity of their doctors.
On the negative side, there are many fake articles, web pages and online communities that mislead patients regarding their health. These sources even encourage people to stop taking their medications because there are ‘hidden cures’. For example, people living with HIV on antiretroviral drugs are told to stop their medication, because HIV has a cure, which the doctors are hiding to support the pharmaceutical industry. The same applies to cancer.
The paper also mentions anorexia. There are web pages and thousands of videos on YouTube supporting this eating disorder as a lifestyle. Girls, especially those in their teens, follow these sites in order to have the ‘perfect body’ often seen on social media, news and magazines. The article points out that videos promoting such a lifestyle have more views and followers than videos with real and accurate information.
A similar trend is seen when it comes to vaccines and vaccinations. Research has shown the power of vaccines to prevent diseases and save lives. Yet, there are anti-vaccination movements online.Who doesn’t remember the panic that was caused by a fake article linking autism to the MMR (Mumps, Measles, and Rubella) vaccine! In fact, some mothers are still reluctant to vaccinate their children.
Another such example concerns Gardasil, a vaccine that is used against certain strains of the human papillomavirus (HPV), that can cause an estimated 70% of the cases of cervical cancer, and is also responsible for cases of anal, vulvar, vaginal and penile cancer. The vaccine has to be administered to both females and males during their early teenage years. However, conservative groups in the US have expressed their fears that vaccination with Gardasil might give girls ‘a false sense of security’ regarding sex and lead to ‘promiscuity’.
Regarding the Ebola outbreak in western Africa, the paper mentions that rumours and misinformation spread through social media led to widespread panic. The paper also mentions an article that evaluated tweets in the affected countries in Africa, which concluded that social media posts with false information were retweeted and liked more than those with real and accurate information.
Furthermore, it is my opinion that news media also plays an important role in this spread of information on social media. During the Ebola epidemic, they decided what went ‘viral’. For example, the few cases of Ebola that crossed the African continent and entered Europe and the US made more headlines and spread more panic than the hundreds of cases in Western Africa.
Nowadays, diseases travel almost as fast as information around the web. Physicians and patients therefore need to exercise caution regarding this. Do remember that there can never be a complete online substitute for your doctor – so never forget to consult one, even if you did consult the web beforehand. Don’t hesitate to go for a second or third opinion, either.
The author has an MD and MS in ‘health policy and HIV’, and is currently doing his Masters on ‘global health and development’ in South Korea.