Like any truly disruptive technology, the web changed the world in myriad ways. Can you remember times before the internet? Surely the medical world can. Before the internet the amount of patients showing up at the doctor’s with a binder full of ‘mediknowledge’ downloaded from the internet and demanding answers, challenging the knowledge of the expert, was definitely smaller than in today’s world. For a long time medical and pharmaceutical knowledge was the domain of a select group of people and organizations. They were the one and only point of reference. This has all changed. As access to specialist information and specialist tools increases, many of the walls separating the medical world and the rest of us come tumbling down.

In the ‘old’ model, research in terms of diagnostics or cures, was – and often still is – ruled by the cult of numbers. Many rare diseases are considered too costly in view of limited statistical impact, hence considered ‘economically  uninteresting’  to investigate, leaving groups of individuals with rare diseases or developing countries out in the cold. 

Wired magazine tells the story of Hugh Rienhoff. Reminiscent of Lorenzo’s oil, the article shows the admirable and moving quest of a parent in search for an explanation for his daughter’s genetic problems and the difficult relationship with the inner culture of the medical world as he pursues his journey. Rienhoff launched a website mydaughersdna.org to share his experience with parents fighting the same battles, exchanging insights gained, problems encountered, etc.

The medical and pharmaceutical world is changing … from within and under the influence of outside pressure. Increasing numbers of individuals start their own research journeys thereby co-setting the agenda, the pricetag for full-genome sequencing is falling, increasingly medical cases are being documented in – many times open – online shared databases (e.g. DECIPHER) leading to exponential increases in insights gained, pharmacogenetics promise the arrival of truly personalized medicine, previously specialist lab technologies are coming within reach of individuals.

Like with any opening up of previously closed ecologies of information, there is the issue of quality of information and interpretation on which ‘knowledge’ depends, the spectrum with on the one end experts, on the other quacks. Could a p2p model work in the medical world? Especially in complex areas such as genetics it already is leading to massive change. Could a more open model of knowledge exchange benefit the medical profession and humanity in general? Surely, there are advantages to be gained, yet also requiring new mechanisms to be put/grown in place and new challenges to be tackled.

This entry was posted on Friday, February 6th, 2009 at 17:53 and is filed under future, science, society, technology, trends. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.