Technological advances in communication promote the idea of a global village, expanding and extending the power of the individual to ‘be’ anywhere at any time, facilitating instantaneous strong bonds between people worldwide.

Here, the author looks at the power of social media as a key to accessing collective knowledge and, ultimately, helping to improve diabetes care and self-management.

Today we are witnessing a paradigm shift in consumer confidence in communication channels. Consumers are increasingly taking the word of recommendations from friends and the opinions they read online over the traditional messages they see on television or in print magazines. If we are to believe global marketers, major companies that do not have an online social media presence are making serious losses every second of every day. Suddenly, anonymous bloggers writing on ‘independent’ blogs or personal Facebook pages have a very strong power of persuasion over consumers who have become wary of traditionally pitched corporate marketing messages.

Social media for NGOs

Social media can be of immense value also to civil society and the non-profit world, although the list of functions may change. NGOs do not rely on sales; we look for objectives or results – collecting useable insulin and diabetes supplies for 8,000 needy children around the world as in the case of IDF’s Life for a Child programme; JDRF’s campaigning to raise many millions of dollars to support research for a cure for type 1 diabetes (they have raised USD1.6 billion since 1970); or the campaign launched in 2012 by IDF targeted at the bilateral and multilateral donors to alleviate the funding gap faced by diabetes and non-communicable diseases.

One of the ways to achieve these outcomes may be to recruit new members, who may be called on to donate money or time, spread campaign messages, write letters, attend demonstrations, or perform whatever task is required to reach the campaign objectives. Anyone can see how leveraging social media to recruit new members and activate and motivate existing ones might be more effective than relying on traditional methods of communications.

Social networks are the perfect environment for igniting movements and organizing people around a cause. Facebook pages, Twitter chats, blog posts, videos posted to YouTube or other sites can massively amplify an organization’s web presence at very little cost.

Some working examples

Tudiabetes.org is a social network created to speak only on issues related to diabetes of all types. The community also supports the actions of the World Diabetes Day campaign endorsing the International Diabetes Federation – like the Google Doodle petition on 14th November and the Campaign ‘The big blue test’. This community united people from California to Brazil.

Já Mediu? (‘Have you measured?’) Is the first social network dedicated to diabetes in Brazil.

On Facebook, there are many active diabetes groups. Jóvenes con Diabetes – América Central y Sul (‘Young People with Diabetes – South and Central America’) was formed recently and aims to share personal experiences, foment professional exchanges and actions that can be undertaken jointly via the Internet.

IDF Young Leaders in Diabetes is a community that brings together young people from around the world and enables discussions about all aspects of diabetes from A to Z – ranging from local projects that these leaders are engaged in, to publications, current events, new technologies and ideas, and questions related to their treatments.

With the classic adage in mind, ‘a picture paints a thousand words’, an image was published in Facebook (at the Blue Power Diabetes page) and had a viral effect that reached more than 10,000 unique users in a just two days. It carried the byline: Diabetes is not contagious, being a good example is. Believe it or not, some people still believe the myth that diabetes can be contagious!

A learning process

Nowadays, it is common for an individual who has recently become aware of a problem to seek a related online community and navigate the records of users who have shared their experiences. With the support of this bank of collective knowledge, he or she reflects on the problem, and explores available information, and feels able to act. And this can form a continuous spiral of learning.

However, contrary to popular belief, not all communities provide independent online education to their users. One assumption might be that communities need to have leaders, opinion-makers who are protagonists, and who assist in knowledge management. They take the role of knowing more and providing knowledge to other usurers.

Yet this does not mean the communities need mediators to be able to ensure learning. Studies indicate that incorrect information published in the communities are ‘self-managed’ by the users and that this is a key element of the collective learning process.

In conclusion

Online communities act as a catalyst in the learning process of the person with diabetes, accelerating behaviour change and adopting of new habits. By sharing experiences with other people in similar situations, people may feel more comfortable asking their healthcare professional – having reflected more on their doubts and feelings, which thus allows them to become more able to make informed decisions.

The ‘patient’ can become the ‘owner’ of his or her diabetes, and less passive about their own treatment, gaining the confidence they need to question and seek to adapt the scientific medical knowledge to the realities experienced in one’s own body – and thus maintain good control of diabetes.