The Next Steps for Kidney Cancer Resource?

I’ve had to take a long hard think about the direction of the Kidney Cancer Resource over the last 2 or 3 months and I’ve drawn a number of conclusions.  Some are less palatable to me than others.

Kidney Cancer Resource has been going for about 3 years now (pretty much since my own diagnosis) and it’s been a real learning experience.  More recently however I felt that I needed to step back and look at why I set this up in the first place i.e. what were my motivations?

Initially I created the site because there was no single place on the web that had a fully aggregated library of information pertaining to Kidney Cancer.  At the time you had to really surf around and hope you didn’t run into too many sites that contained those odious people selling “snake-oil” pills and potions that have no other impact other than to inflate the creators bank account.

The idea was that I used a standard Wiki based format that enabled others to add to, change and correct any information within the site without the need to be a computer programmer or IT expert.  One of my biggest frustrations with Forums and mail lists is that the information gets lost very easily, and although there are archives, searching them is not a simple task and is very time consuming.  The intent was to make sure that the forums and mail lists could use it as library where they could point people at information to save the constant repetition (the typical “Hi I’ve just been diagnosed with Kidney Cancer, what do they mean by Stage and Grade?” type questions).

Lists and forums are invaluable as support/self help mechanisms and communities and I never want to say anything bad about them, I use them a lot myself, especially ACOR (KIDNEY-ONC) and The Kidney Cancer Support Network forum, when you need help and a freindly ear or advice there is nothing better than a community of people that have been through or are going through similar experiences, it’s as real as it gets.  My belief however was that an organic library would save time and guide people away from the “snake-oil” sales people to a place with trusted and relevant information. I was hooked in by some “snake-oil” potions myself and one of them made me violently ill …. Never again, it was frightening!

So has Kidney Cancer Resource achieved this? Well, I like to think yes, it’s achieved some of these aspirations. Greg Lance-Watkins and myself spent 100s and 100s of hours, days and months pulling the initial set of information together, nearly 3000 pages to be precise. It enables 4 things I think:

  • A Library for Kidney Cancer, Drugs information, a dictionary of terms etc etc
  • A place people can tell their stories and keep medical diaries (kind of like a blog)
  • A constant source of news.  As we see news article pertinent to Kidney Cancer these are added to the rolling news
  • A place where people who run campaigns related to Kidney Cancer could create simple pages with information.

To this end I think it’s been a success, and the readership back’s this assertion. What really hearted me the other day was when people came up to me at the James Whale Fund for Kidney Cancer Patient day and thanked me for providing the web-site.  Made me feel very warm and fuzzy :)

So what’s next then?  Well, after much deliberation and heart wrenching I’ve decided it’s time to re-think the direction and how we can take what’s good about the web-site, enhance that benefit and deliver it to patients, carers, families and friends.

I have the ability to track how many people read the site each day, what they read, and how long they stay on each page, where they come from (i.e. What brings them to Kidney Cancer Resource) and where do the go to once they’ve finished surfing the Kidney Cancer Resource site.  This has provided me with excellent feedback.  Some of it has come as a shock to me.  What do people read?

  • The rolling news section on the main page
  • The Basic information around Kidney Cancer
  • Some of the stories
  • Pages that I (or others) specifically direct people to e.g. Events, Drug articles

Harsh though it may seem …. that’s pretty much it.

The real thing I wanted to achieve hasn’t really happened as much as I’d like, and that’s for others to join in and add information to the site, it’s happened sporadically but not at the levels I’d hoped for, and to that end it is a full time job for one person to keep the site up to date, factual and meaningful.

All this sounds very much like I’m going to close the site down.  Well that’s partially true. The intention will be to take what’s good about Kidney Cancer Resource, enhance those strengths and merge them into the James Whale Fund for Kidney Cancer’s web-site where I feel it can do more good.

The thing that makes me nervous about Kidney Cancer Resource is that it could become dangerously out of date and actually end up providing the wrong information to patients. Unless other users are willing to help keep the information solid then it’s too much for one person alone, but worse it becomes a liability.

As I said, this has been on my mind for a number of months now.  I spent some time at the Patient day talking to people, especially our friends from the KCC (Kidney Cancer of Canada).  What they have done over the last 2 or 3 years is tremendous.  They made a key point to me in their talk and that was “we’re kind of sick of seeing web-sites popping up that describe what a Kidney is and what Kidney Cancer is” (word’s to that effect), and do you know what?  They’re right.  What you need is what they’ve produced which is a pamphlet full of enough relevant detail to help patients through the maize of this disease, not something that tells them what they already know.  I was given their kind permission to take this document and digitise and modify it to make it UK centric.  I have also asked a couple of the Oncologists that were at the meeting to help me go through this and make sure it has their approval from a UK perspective.

I am firmly of the belief that as a global community information provision is something that crosses all international boundaries, and if we all work together we can make this information organic and relevant.  I am guilty of the sin of trying to go it alone and make my mark, however I am now convinced more than ever that this has to be a collective effort.

Think how much we could achieve with our battles against NICE if we’re able to stand behind information that has international recognition, backed by the world’s leading specialists … think how much that could potentially help our own UK specialists when they draw up their guidelines for new drugs and treatments.

I hope others in the Kidney Cancer community in the UK will look to do the same type of thing i.e. Join our efforts together under one umbrella.  For me, I hope I bring technical expertise and energy to the table, however I want to make sure I don’t spread myself too thin otherwise their wont be enough to go around.  So it makes more sense for me personally to channel that energy into a single organisation under the banner of the James Whale Fund for Kidney Cancer.

I’m as impatient as the next person (probably more so), however I realise I can’t move all this information overnight.  This is my challenge and it will take time.  Normal service will clearly continue until it is replaced and I’ll give updates as we progress.

So it’s not goodbye to Kidney Cancer Resource as such, it’s hello to a new era and I hope something better and of more value to the wider community.   2010 is the year to get it done!

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Posted under Andy Thomas, General

2 Comments so far

  1. paul March 18, 2010 11:45 am

    my name is paul anderson from baltimore maryland… cancer has been ongoing in my family… i lost both parents to cancer,… and it is so much pain ive not been able to get over.. as we all know medically there is no solution to it..and treatment is very expensive..so someone ntroduced me to a native medical practitioner in africa..i had a job there to execute so i tool time to check out on him.i showed him all my tests and results.. i was already diagnosed with kidney cancer and it was already taking its towl on me.. i had spent thousands of dollars so i decided to try him out…i was on his dosage for 6months. although i didnt believe in it, i was just trying it out of frustration… and after 8 months, i went for new tests… and you wont believe the cancer cells are already dying and in a few months, i will be clean. i dont know how to thank this man… i just want to help others in any way i can… hope he helps you out.. his email address is lekanysf01@yahoo.co.uk

  2. Julia Mitchell August 12, 2010 7:10 pm

    being a computer programmer myself makes me very proud of my job-;~

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  1. Kidney Cancer Resource Has Moved……. December 31, 2009 10:00 am

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