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Information Society

Cristina Ribas

Professor of Journalism and New Media at the University of Pompeu Fabra

Health and Innovation 2.0

20 may 2010

Photo: Wayan Vota

The paradigm of communication has changed dramatically since the revolution in information and communication technology (ICT) in the late twentieth century. And not only has it changed because in the new global ecosystem millions of people have become broadcasters; in the current era of web 2.0, society is changing in all its activities, from education and scientific research to health and social relationships. This is the thesis of the sociologist Manuel Castells, the expert who has best explained the digital revolution and its consequences.

Let’s focus on health and on some examples that show these changes. On the one hand, we have new research methods based on interaction between people and digital tools. Thus, there is no need for epidemiologists to detect pandemics by sampling the population. By simply searching Google for keywords related to flu, one can know when and how the virus is spreading. In fact, a study published in the journal Nature found that both observations match perfectly. A previous study, in this case appearing in the New England Journal of Medicine, also showed how, in certain diseases, social networks outweighed the very genes as far as developing treatments for them.

There is an Internet portal that exemplifies the power of citizens in the information society. Its name is quite explicit: Patients like me. This is a community of patients founded in 2005 in the U.S. by Jamie Heywood, an engineer at the Massachusetts Institute of Technology, (MIT), along with others who sought to create an online space for patients with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s Disease, including Heywood's brother. Today, the portal has more than 45,000 registered users dedicated to sharing information and experiences on this and many other diseases in what has become a powerful social network. Users contrast scientific information on their diseases while constantly evaluating symptoms and treatments.

New research methods based on interactions between people and digital tools are transforming the healthcare landscape All knowledge generated by Patients like me forms the foundation of its business model because the data gathered on the site is sold to laboratories and health institutions. Doctors and researchers can access the information, once the personal profiles are removed, and contrast the effectiveness of treatments. Its founders are saying it is a digital service model where everyone wins and that, therefore, it is a winning business model. The truth is that it does not stop receiving awards and recognition, the latest coming from the magazine Fast Company, which named Patients like me as one of 50 most innovative companies in the world. Nor does it stop launching new initiatives: it recently announced the creation of two new communities, one dedicated to epilepsy and the other to transplantation, through agreements with two pharmaceutical companies that have interests in them: UCB (Union chimique belge) and Novartis, respectively.

Patients like me continues to gather communities around diseases of all kinds. It already has strong communities for ALS, multiple sclerosis (MS), Parkinson's Disease, fibromyalgia, AIDS and chronic fatigue syndrome and some rare diseases, among others. They are active communities that have reached the critical mass of patients and families to be taken into account by the greater healthcare industry.

Everybody wins, but is important to note the power shift in favor of patients instead of companies. Under this model, the communities are the ones that promote the clinical trials that interest them; that is, the patients themselves put forward those studies aimed at improving their quality of life. By contrast, companies often prioritize research according to commercial criteria. Either way, companies are interested Patients like me because thanks the website the time it takes to carry out studies is dramatically reduced. The search for appropriate (and motivated) volunteers is much quicker and more effective when compared with the classic method of collecting test groups through doctors, which, in addition to being slow, often creates problems of trust. Obviously, a premise of this system is transparency and mutual trust, which also represents an innovation that goes beyond health and touches on how to build new environments of trust between companies, institutions (both medical and governmental) and citizens or consumers.

Doctors, businesses and institutions such as the U.S. Food and Drug Administration, react when improvements in treatments or investigations arise: new clinical trials, developments in genetic testing or innovative ways to evaluate diagnostic methods. The latest initiative of Patients like me has been to buy a company dedicated to treating pain. The purchase was based on the fact that “20,000 of the members suffer from pain, and, therefore, they know what works.” For now, this is a technology company that helps patients manage pain on-line and transmit data to their physicians. The day when patients or other communities will be able to run their own pharmaceutical company does not seem very far away. Simply apply the rule that “if you want to be helped, help yourself” or, better said, take advantage of the Health and Innovation 2.0.

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