Vital information

At that time in 1990 I was impressed by the level of expertise that was evolving in a medical and scientific sense. Debates about how scientific research should be conducted addressed issues such as trial design, for example. If a person was participating in a trial of a new drug and was part of the test group that is administered the placebo and this drug appeared to be a good drug, then this person missed a chance of survival. Handing out drugs that have not been tested, can be as unethical though. By making the design of trials subject to debate, scientific methodology became an issue of public and political debate. As a result the notion of 'compassionate use' was introduced, which facilitated certain people to use a certain drug while it was still in its trial phase. The clash between the medical discourse and the very rapid emancipating of 'patients' was very intense. The doctors and researchers were not used to having to discuss their work in this way. Today, medical practice has adapted to the fact that a patient can study via the Internet all that there is to know about their disease. At the time this new professional balance was just being explored for the first time.

The capacity of the Internet to share scientific results immediately challenged the way medical research was disseminated till that time. People working in Africa were used to the fact that it would take up to 6 months or more before medical insights would reach them. When publication strategies changed during the nineties, first hand information became available to doctors all over the world the moment that it was published on the Internet. Since then patients can inform themselves as well via the Internet and formulate how they want to be treated. The deconstruction of power structures in the medical world due to the rise of the Internet appears to be significant. It became clear at the 0+Ball, especially through the work of ACT UP, that lay people, patients, could handle complex issues and actually contribute. The fact that the expertise of specialists was used and questioned simultaneously changed the discourse between the different stakeholders. Vital information was generated and exchanged and that made the experience very worthwhile for many people, including some of the experts who had contributed.

The fact that there were people, who were not feeling well but who had enough energy and did take the trouble to log on and appreciated what they found, made me realise the notion of 'vital information' that I have worked with since. When in trouble, one needs good information and good communication; one needs 'vital information'. By 'vital' I mean information that supports an individual in his or her specific circumstance; information that supports survival for a specific person in a specific place at a specific time. If I argue that the 0+Network generated vital information it is significant that the combination of personal communication and good information was experienced as one environment. The fact that the information was valued is also due to the fact that this information was produced in a certain context; a context in which many perspectives were represented and a context that also clearly existed simultaneously in real life (in Paradiso, in San Francisco, in New York, in Brazil and elsewhere). The 'aliveness' of the information was supported by the communication, the 'goodness' by its context.

The generation of vital information is one of the reasons why mediated presence has been embraced. When presence is mediated it always loses elements of natural presence, but it overcomes these limitations because of its transcending the boundaries of time and place. When the mediated presence generates vital information, which reaches people in their own situation, the mediated presence adds elements to natural presence which natural presence otherwise would not have possessed. The surpassing of the limits of time and place added qualities to the natural presence of the people who were connected to the 0+Network.

When one is confronted with information that may have a deep influence on one's survival, 'intelligence' changes. One has to deal with issues in a different way. Survival is a very powerful stimulus, which makes all sort of latent talents manifest. It can create focus, courage and perspective. Social and political history has shown that when people unite from a perspective of survival they can win wars. At the GHP and the 0+Ball it became clear to me that a computer network that provided access to lay people could be a very powerful tool in the battle for survival, provided that people generated vital information for one another.

It is possible with most issues to formulate the dimension of survival and to find where and how 'vital information' is produced. Vital information is not good or bad, it is the information that matters from the perspective of the receiver. Survival has a social dimension, a physical dimension and a cultural dimension. For many people it also has a spiritual dimension. Vital information is vital to that person or group of people in a certain specific context, at a certain place and at a given moment. Time is crucial for vital information, as is the fact that it has to reach the specific place where the person using the vital information is located at that time. With Patrice Riemens we pushed the notion of vital information even further in an article written for Chitrabani, a media centre in Calcutta, and published in the Economic Times of India (Nevejan & Riemens 1995).¹⁹⁹ In this article we connected vital information to social survival. With the term 'social survival' we wanted to emphasize that it is not just a question of surviving literally, but also surviving as human beings who treat each other with respect and dignity. This study builds further on the insights that we formulated at the time.

The question about where and how vital information is generated creates insights when designing environments for mediating presence. It is not only concerned with whether something will function, it actually asks about the meaning that will possibly be produced. When vital information is exchanged, meaning will evolve, because the exchange has an impact on people's presence, on their physical or social survival. Vital information may be understood as 'efficiency' in design trajectories, but I argue that is not adequate. Vital information touches people's presence and in doing so it influences how people will (inter-) act.

Because vital information can only 'work' in context, the organization of trust and truth are very important in this perspective. Therefore, the gathering of the crucial network is necessary, as I will argue in the next section.