| The idea | Guidelines and Handbook |
| The beginning | Other content |
| EdRenINFO | FAQs |
We realised that as we have a cutting edge research group, we should have a website. So we were thinking what to put on one. However at the same time we were becoming increasingly aware that patients needed more information about what was wrong with them, and were beginning to embark on making leaflets. We made some, but also made web pages. Then we realised you can print out webpages even more simply than you can make a leaflet, and you don't run out of webpages. So the idea for EdRenINFO was born.
In the end, pages for the research group came very late in the day and may well be still rather underdeveloped.
A pilot version of the site began in early 2000. It had a home page with rather clunky frames and the first few articles on EdRenINFO appeared. These were written by Gemma Browne with Neil Turner. Gemma was a research registrar in the lab at that time, and had never written a web page, NT had done a few.
This remains the most useful and used part of the site. Gemma badgered many members of the department at all levels to write pages, which were then edited mercilessly. Now we are making occasional additions but the major work is in regular review of the information provided on existing pages.
It means that we are making available information that we know is correct, whatever else patients read.
When we had done about 15 or 20 of these articles, we began to realise that they were more than just patient information. They are also more than most non-specialist physicians know about the individual diseases we have written about, and they are valuable for other staff on the unit, and for medical and other students too. So it forms a part of our teaching resources, and whenever we give the information to a patient we really have to give it to their general practitioner too, or it wouldn't be fair.
Dr Caroline Whitworth and Neil Turner set out to produce a printed handbook for the Unit in early 1999. It was finally published in a loose-leaf A5 folder format in January 2001, after circulation of draft versions over many months. It seemed logical to make this available as an online resource also and this was undertaken progressively during 2001. We thought quite a lot about whether this should be open to the world as a whole, but ultimately couldn't think why it shouldn't be. The format conversion was made possible by the use of a certain amount of child labour. Some editing was required and we haven't published internal administrative arrangements, which form section 1 of the handbook, on the web. The Transplant Unit handbook received the same treatment during 2002.
The history pages were created because NT was interested in knowing more about the history of the home unit. Many of the characters involved in the early days were still alive but retired. A medical student was recruited to trawl for the information, and did extremely well.
The education pages were partly an obvious resource, but the development of the website also happened at a time when a new curriculum was being introduced in Edinburgh, and a new renal module for all students was planned during year 4 (first run in 2001).
Why are the EdRenINFO articles so detailed?
If people are going onto the internet to look for information, they aren't generally looking for just a couple of sentences. So most pages are written for the intelligent and moderately informed layman. This makes them too complicated for some. Where a subject is particularly complicated or important, we've attempted to get round this by writing two pages, at differing levels of complexity. You'll see that, for example, in the articles on nephrotic syndrome.
Who reads it?
Almost anyone who uses the Internet. Many of the people who contact us about it are patients, but the range is enormous. Many are from the UK but readers are from all over the world.
How many hits does it get?
Measured only as new users coming to the home page, the hit rate rose progressively to about 150 new users/ week by the end of 2001 (20 to 30 per day), 250 per week by the end of January 2002. During 2002 we changed to a system that counted hits on individual pages. They were not all covered, but counting this way, we were receiving 700 hits per day in September 2002. This had risen to 1000 hits per day in late 2003, 1500 per day by mid-2004, and a total of 1 million hits by January 2005. During 2005 we started to use Webalizer to analyze hits on all pages. On average during November 2005 about 3000 pages were viewed each day by over 1700 different visitors, and there were about 800,000 page views in 12 months. There is no counting of hits by users accessing the site internally on the Lothian Hospitals Intranet.
Who writes it?
Most of EdRenINFO has been written by members of medical staff on the unit. Some pages have been written by nursing or specialist paramedical staff such as transplant coordinators, dietitians, social workers. They are identified by name but not by job or grade at the end of individual pages. So far all EdRenINFO pages have been edited by GB and NT for accuracy, consistency and clarity.
EdRenHANDBOOK has again been composed by many members of medical, nursing and other staff, in this case edited by CW and NT.
Other pages have been written by research or other staff.
Should I believe it?
All pages are carefully edited by experienced nephrologistsbefore posting. Where appropriate we have had pages reviewed by other nephrologists or by non-nephrologists with relevant expertise. So the information should be pertinent and accurate. We really appreciate being told if you suspect it of being misleading or just plain wrong.
The site receives no commercial support and nothing is written deliberately to encourage the use of the products of any particular company.
However note the cautions frequently repeated throughout the site about patients' individual circumstances, and our fallibility.
Please be particularly cautious about drug usage and dosing as these are particularly subject to formatting errors and misinterpretation.
Confidentiality and privacy policy
The HONcode Foundation requires a clear formal statement of our policy and we are happy to oblige.
- As described above we do not aim to collect information about individuals or to give individual advice. If we are sent any personal information, including names or email addresses, it is by email as there is no facility to receive it on the webserver. Emails are forwarded to appropriate staff within the Unit who handle it according to all legal and ethical principles surrounding such confidential data in Scotland. This includes the principle of non-disclosure to any other individuals or organisations without the permission of the individual.
- We do not use cookies on this website
- We keep usage statistics files in which are stored IP numbers of PCs contacting the website, in order to show the number of unique users and usage patterns. These files are not used for any other purposes, and are not made available to any external individuals or organisations.
Up to the top of this page
Back to EdRenINFO
Go to the EdREN home page
Please contact us at renal@ed.ac.uk with any comments. This page published June 2001, last modified