My name is Andrew Flower and I am a researcher based at the University of Southampton. I am currently involved in a 5-year research project exploring the possible role of Chinese herbal medicines in the treatment of recurrent urinary tract infections (RUTIs). Part of this work involves exploring how RUTIs affect the women who suffer from them. One of the ways in which I have investigated this is by accessing the public discussion forum on the COBF website. I read through the comments that had been posted since the beginning of the forum in 2003 until 2012. I was incredibly moved by the experiences described on the website and impressed by the articulate accounts of the impact of RUTIs on women’s lives, and the many ways in which they tried to find relief from their symptoms. Some were successful, some were not, but their stories were really important records of the ways in which they managed their condition.
If you read about RUTIs there is very little in the published literature that really describes the full extent to which this condition can impact on peoples lives. As I read through the web forum it became increasingly clear that, far from being a mild self limiting illness, RUTIs can affect every aspect of life and cause a great deal of physical and psychological suffering.
I have written a paper, with some other researchers from Southampton University, describing what I found on the website. We use a form of research called qualitative research that is interested in how people describe their experiences in words. We analyse some of the key themes that run through the site such as the impact of RUTIs on women’s lives, attitudes to doctors, and the reported experience of complementary medicines. We use quotes from the sites to illustrate the points we are making and because they are eloquent testimonies of real life experience that bring the article to life. You can read this paper by opening the attachment that comes with this posting.
We would like to get this paper published in a research journal so that other health care professionals and researchers can gain insight into your experiences. Hopefully this will increase understanding and may contribute to improvements in how women with this condition are treated. Before it can be published the paper will be changed in two main ways. Firstly it will almost certainly have to be reduced in size because research journals insist on a limited word count. Secondly all the names of the women who are quoted in the paper will be altered so they will be anonymous. This will help to preserve the identity of anyone we quote but you should be aware that it is still possible to put a quote into a search engine like Google, which could then be traced back to the COBF web forum. However, this web forum is already accessible to anyone using the internet, which is how I came to read it in the first place, and these quotes are already in the public domain. I suspect that most of the contributors to the site who wish to preserve their anonymity already use a different name for their postings and it is these names which could be theoretically tracked.
Some of you who contributed to the discussions may prefer to avoid this increased exposure. If you are one of the women who we quote in our paper and you would prefer not to be included then please contact me at the email below. I will remove your name immediately and will not use any material that you have quoted. For those of you who have no objection we would like to thank you for letting us use your words to help improve the understanding of this disabling condition.
Could you let me know if you would prefer not to be quoted in our paper by April 18th. If you have any other additional concerns or comments then please don’t hesitate to contact me.