The online influencers of the health world, real spokespersons for patients

From information on a condition or disease to emotional support, online influencers are taking a growing place in patients’ lives. Alcimed, a consulting firm in innovation and new businesses, has explored the impact these influencers have on patients in terms of helping them understand their disease and potentially changing their attitude towards it.

The role of Internet and social networks continues to grow every year. In 2018, there were 4 billion Internet users and 3.2 billion social network users worldwide. In France, 88% and 60% of the population use the Internet and social networks respectively. Youtube is the most used platform by the French (69%), followed by Facebook (65%), Instagram (26%) and Twitter (24%)[1].  Information gathering, experience sharing, community building, the possibilities linked to these new communication channels are endless. In fact, more and more people are using the Internet for health-related issues (for example, information about a disease, a treatment, therapeutic alternatives) or using social networks to search for information or share their experiences[2][3]. The increasing use of such channels, coupled with increasingly limited availability of doctors, encourages patients to seek information from online stakeholders. Thus, by providing information which is of interest to patients, they can have a real influence on patients and their behavior. With this in mind, it is interesting to understand why patients are moving towards these stakeholders and which ones have the greatest impact.

A diversity of online influencers to meet many patient expectations

Among the various players present online, those who are clearly visible on the Internet and social networks, and have an impact on patients (particularly in terms of understanding their pathology or changing their behaviour) are described as influencers.
The diversity of online influencers in terms of typology (websites, institutions, individuals, patient associations, etc.) makes it possible to meet the different needs of patients throughout their illness, in a simple and almost direct way.
Thus, when diagnosed, French patients readily consult websites to gather as much general information as possible about their disease (such as definition, causes, symptoms, implications for their future life), particularly to supplement the information provided by their doctors..
When initiating treatment, patients often prefer to turn to more specific sources (hospitals, universities, doctors…) to understand the various treatment options, and in particular their benefits and side effects.
Secondly, patients want to learn how to live better with their illness on a daily basis (going out, social life, work, travel). In these cases, particularly in France, they often turn to patient associations who provide patients with more precise and personalised information, particularly in such areas.
Finally, throughout their illness, patients need emotional support and the majority of them use social networks (Facebook, Twitter, Youtube) to share their experiences and create communities.
Patients interact with each other on Facebook groups, forums such as Doctissimo, or the Carenity platform. In this way, patients can become influencers themselves, as they represent a real support for others by sharing information and tips from everyday life, inspiring some and even giving them hope.

Online influencers may not always provide accurate and appropriate information

 The challenge for patients is to sort through this huge volume of information and find the right source that will meet their expectations.
The quality and reliability of the information they receive varies and depends on the actors who generate it. The weak point of the web and social networks is the lack of verification of the veracity of the published information.[4][5]
Online players are also likely to have a negative impact if they spread inaccurate or non-personalized information. Patients may be distressed by some alarming testimonies, sometimes leading them to change their behaviour and possibly the treatment followed without prior medical advice, potentially putting their health at risk.
 Online influencers can therefore have a significant impact, both positive and negative, on patients in terms of knowledge, understanding and management of their diseases. Hélène Fantasia, a project manager at Alcimed, explains that “the role of the doctor also evolves with the habits of the patients. They increasingly see patients coming to their offices with a clear-cut opinion about their diagnosis or the best treatment to use. The important thing is no longer to convince the patient that the doctor is more right than they are, but that he/she refers them to the best sources to find quality information about their situation.” And she adds: “Beyond the role of the doctor as a guide, one could imagine that patient or doctor associations could certify certain influencers, particularly on social networks. This would ensure the quality of the information provided and ensure that patients can find the right answers to their questions.”

[1] Digital, social media, mobile and e-commerce in 2018, We are social
^[2] Use of the internet as a health information resource among French young adults: results from a nationally representative survey. Beck F, Richard J-B, Nguyen-Thanh V, Montagni I, Parizot I, Renahy E. 2014
^[3] Digital Barometer, CREDOC, 2015
[4] “Internet: a transforming factor in the doctor-patient relationship? “, Christine Thoër, 2013
[5] “Health: why it is so difficult to find reliable information on the Internet”, Le Monde, 2017