Side Effects Threads

Texas_wedge said:

Archiving information
Phoenix, if you can be bothered to read what follows (and, knowing you, I believe you will) you won't be surprised that I think that's a great idea.

I have actually been trying for months to have changes made to CSN that would enable such organised storage of information across all major topics and across all cancer threads. Ironically, I illustrated this, many months ago, with the topic of Votrient side-effects! I've been engaged in lengthy dialogue with the CSN management team which has yielded nothing so far but may do so in the mid, if not short term. Alice had much the same thoughts as mine and we have a thread, started by Alice, entitled

“Collecting kidney cancer information from Kidney cancer patients”

which is at:

http://csn.cancer.org/node/238444

The very fact that this thread has become totally lost***, as newbies start new threads all the time, usually re-inventing the wheel, and the likes of iceman and GaryM have to trot out a fresh version of the same old information time after time, illustrates powerfully why I want change here. [*** as i write, that thread is now 7 pages back and you'd have to go back 341 threads to find it.]

[Looking at the above noted thread again, I think I'll bring it alive so that any interested newbies can read it because my convictions continue in that vein and I imagine that goes for Alice too. If I'm around for a bit longer, I'll resume pursuing it as soon as my next operation permits. I know we're pushing against a half-open door and only time and financial resources are holding back progress.]

It may be worthwhile copying here a small part of my correspondence with CSN top brass to show you the sort of thing Alice and I had in mind:-

Greta,

I can't tell you how delighted I am to receive your reply!

I take it you are a PR expert, fielding my submission on behalf of the geekier people behind the CSN forums who will evaluate requirements and suggestions and decide how best to go forward?

My feeling is that the present CSN offering is very attractive and performing an invaluable function (but if your people can see ways of making it even better, then great).

For what it's worth, I think you have put your finger on the key improvement - better load balancing, studying diurnal patterns and reducing downtime. Improvements there will be welcomed wholeheartedly by the mass of enthusiasts on the kidney cancer forum (which is extremely active for one of the less common cancers) and, I'm sure, all the other forums on CSN.

The other way in which a big improvement can be made is in content management and that is the issue I'm addressing. It's not an issue for the software technos so much as the end users who can do the requirements capture and specification. As I've said, I believe this can be accomplished very easily from the set-up you already have, as follows.

In the side bar to the left of the Discussion Boards Lists (and of the forum lists and of the threads lists and of the message lists) we presently have a brown list of 10 links under the heading "CSN" and a blue list of 18 items under "cancer.org". Below that is a white space which contains a list of threads and of 'friends' peculiar to each individual user. I am simply suggesting putting in a new list (say, in green) which would have about a dozen or so headings, such as those I suggested in the thread "Collecting kidney cancer information from kidney cancer patients" in my message dated April 10 2012.

This would provide top-level pigeonholes in which posters could place messages containing real information (as opposed to the good luck and such-like messages, which would stay in the usual list of threads as they operate at present).

We already have nested menus: click on "Discussion Boards" --> list of cancers; click on "Kidney cancer" --> list of topics; click on a topic --> the list of messages. If we had an intelligently designed set of head list + sub-menus, it would be a cinch for users to post messages at the bottom level, thus enabling others to find that info. by 'drilling-down'. A theoretical example would be for me to find highly specialised info. by going to "RCC sub-types" in the green menu --> list of sub-types, click on "chromophobe" --> 2 options (viz. with or without sarcomatoid de-differentiation) click on "with sarcomatoid variation" --> message list devoted entirely to sarcomatoid, chromophobe RCC!

That structure would be of enormous value not only to patients but also to doctors, researchers and drug companies. For instance, all of those categories of users would find it of value to easily home in on side-effects of treatment, e.g. click on "Side-effects" --> "Drug treatments" --> "Adjuvant therapies" --> "Targeted agents" --> "Votrient (aka pazopanib)" --> messages posted.

At present, information on patients' experiences of the side-effects of the drug Votrient are scattered irretrievably throughout arbitrarily headed messages in innumerable threads with often uselessly opaque titles.

I can illustrate this: - the best I can do, at present, to try to discover such information is to do a 'search' for "Votrient side-effects" and this yields a list of 7 threads entitled:

[HERE, THE LIMITS OF OUR S/W LOSE THE ORIGINAL FORMATTING WHICH READERS COULD CHECK BY PERFORMING THE SEARCH I'VE SUGGESTED.]


Title Author Replies Last Reply
Pazopanib trial for recurrence prevention KGField 5 02/15/2012 - 05:28
nexavar side effects starting adobe 17 03/02/2012 - 18:38
Need Advice - RCC Stage 3 - Adjuvant therapy - Clinical Trial - Pazopanib v/s Active Monitoring - Any Vaccines ? Options livealive 52 04/06/2012 - 03:15
ct tomorrow adobe 17 03/10/2012 - 11:35
Second Cycle of Nexavar adobe 6 03/20/2012 - 16:47
Collecting kidney cancer information from Kidney cancer patients alice124 31 04/22/2012 - 10:05


If I go to the fifth of these "Second Cycle of Nexavar", and look I find only one reference to Votrient and that does not give any information at all about side-effects of that drug!

Just think about the two scenarios, if a drug company, or a doctor, or a patient wants to know what the problems are with that drug. Under my envisaged structure they can quickly find all the messages where patients have detailed their experiences of the side-effects. Without that, it is virtually a complete waste of time and effort, looking for a needle that may not be in the haystacks you're trying to pick your way through.

Please bounce this plan off your tech experts. I hope they can confirm that it would be very easy for them to make this very valuable addition. If so, then I would be very happy to organise arriving at a good list of menu and sub-menu items under which users can post hard information that will be of potential use to everyone using these excellent forums.

Very sincerely,

T()


From: "CSNCommunity.Specialist@cancer.org"
To:
Sent: Wednesday, 2 May 2012, 12:03
Subject: Re: ACS CSN kidney cancer forum

Dear T()
Thank you so much for your thoughtful ideas and suggestions. I apologize for my delayed reply.

I did read the thread and understood some of it. ;-) My expertise is not in web design or the technical aspects of functionality, but understand the broader concept of your desire for a better way of organizing and eliciting information from other CSN members...and increasing the number of members participating in the kidney cancer forum. Your ideas are timely in that we are in the process of designing a formal evaluation of CSN that will include opportunities for members to provide feedback such as yours.

I'm not able to say what kinds of site changes may be made to the site in the near term. Whatever ultimately is done will be driven by the findings of the evaluation. However, I can tell you that we are also working on steps required upgrade our software application which will change a few things in terms of appearance and functionality. Most importantly the upgrade should improve overall site performance to reduce load time and number of outages.

On a final note, please be assured that all of your suggestions, and others who contributed to the thread you sent, will be seriously considered.

Best regards,
Greta

Your CSN Staff
American Cancer Society Cancer Survivors Network®

This is a small part of the correspondence which I shall endeavour to follow up on soon (Deo volente). I think I can safely conclude that you would lend your support to this initiative?

Texas_wedge said:

CSN feedback
Correct. They have acknowledged the validity of all that I have said to them, intend to try to accommodate same and have asked for forebearance since they are amidst major changes and have finite resources.

Thanks for taking the trouble to read the two threads - I've put a lot of work into it that has not been generally seen and I'm disappointed by the lack of progress since many here have agreed that this (and the many other ACS CSN forums) could have far greater value if the sort of structure I've outlined could be implemented.

I'm glad to hear that you agree with my proposition that it's essential that the tree (or other) structure is generated first, even if it's a modifiable work-in-progress.