Twenty-five years ago this work was submitted for a master’s degree in Information Studies. It has taken this long to finally publish it in its extant form.
As the original work was coming to a close, I was approached by a number of research participants who were concerned that they would lose access to the example website I created as part of the project. They felt the information had been useful to them and would be helpful to others in the coming years. The result of those conversations was the creation of The Hysterectomy Association which was used by over two million women every year at its peak.
Whilst this work is inevitably dated, it serves as a useful history of both the way in which patient health information has evolved over the course of the last quarter century, and how the internet and web became the game-changer that has shaped our understanding of both health and medicine.
Many of the issues raised within this study are still with us today and are being exacerbated either deliberately, or as an unintended consequence of the way the technology has moved from being a democratising force to one shaped almost entirely by commercial interests. It is as difficult today to discern good health information from bad, as it was when the web was still in its infancy. The rise of censorship and an exhortation to ‘follow the science’ regardless that the science has been co-opted and captured entirely by those self-same commercial interests has resulted in a more fractured and challenging information landscape than was envisaged by Tim Berners-Lee when the web was first enabled.
Hysteria: the information needs of women having a hysterectomy is also available in the following formats: