HonCode

Go Back   HER2 Support Group Forums > Articles of Interest
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Reply
 
Thread Tools Display Modes
Old 10-18-2004, 05:06 PM   #1
Vicki
Guest
 
Posts: n/a
Is the Internet good for educating patients about their illness? Of course!

However a recent review in the Cochrane Collaboration throws up some inconvenient and potentially disturbing findings.

The findings are that net info is good for knowledge and social support neutral on self-efficacy and behavioural outcomes but may have a negative effect on clinical outcomes.

An obvious area for future research

http://www.cochrane.org/cochrane/revabstr/AB004274.htm
http://www.cochrane.org/newslett/Cons_Comm_Sep_2004.pdf

Cheers
Vicki
  Reply With Quote
Old 12-06-2004, 03:54 AM   #2
Guest-vicki_*
Guest
 
Posts: n/a
An undate from the Cochrane Collaboration which does not leave me with a great sense of confidence...!!!???

Shall keep you posted, but it looks like being several months away yet.

And this is supposed to be one of the world's most respected and accepted ways of seeing/doing this sort of stuff.

Vicki

A. Sender: Kathie Clark [kclark@mcmaster.ca]
Subject: Collaboration Press Release

The following is a press release that will shortly be distributed by John Wiley
& Sons on behalf of The Cochrane Collaboration with regard to the Cochrane
review 'Murray E, Burns J, See Tai S, Lai R, Nazareth I. Interactive Health
Communication Applications for people with chronic disease. The Cochrane Database
of Systematic Reviews 2004, Issue 4. Art. No.: CD004274. DOI: 10.1002/14651858.
CD004274.pub2'. This review was found to have errors. The Collaboration is
distributing this press release in order to be open and transparent about the
problems with this particular review.

Press release:

Contact: Nick Royle, Chief Executive Officer, The Cochrane Collaboration
Phone: +44 (0) 1865 310138
Email: secretariat@cochrane.org

Update to October press release 'No Conclusive Evidence That Interactive Programmes For
Chronically Ill People May Be Detrimental'

November 2004: The Cochrane Collaboration wishes to report that the review 'Interactive
Health Communication Applications for people with chronic disease' (1) has been found to
contain errors. The review originally determined that, among other findings, chronically
ill people using interactive programmes had worse clinical outcomes than those who did
not. Regrettably, errors in data analysis meant that these outcomes were reported
incorrectly. The authors are currently re-analysing their data and will be resubmitting
their results to The Cochrane Library (2) in the future. It is expected that the revised
results will be published in April 2005.

Interactive Health Communication Applications (IHCAs) are computer-based interactive
programmes for patients that combine health information with at least one mode of
support - social support, decision support or behavioural change support. IHCAs are
designed to provide people with chronic disease with the opportunity to become better
informed about their disease and the various treatment options available.

The Cochrane Collaboration supports high standards of quality control and welcomes
comments on and corrections to any reviews published in The Cochrane Library. Compared
with traditional paper journal publishing, the Collaboration's open and transparent
process ensures that all Cochrane reviews are available for real-time correction, providing
experts and healthcare consumers alike with the opportunity to give their input. Crucially,
this process also allows researchers and others to inform review authors of previously
unreported or unrecognised trial results, allowing them to improve the quality of reviews
as they are periodically updated over time. The Cochrane Collaboration regrets that this
particular review was found to contain inaccuracies, apologizes unreservedly, has acted
swiftly to mitigate both this error (which arose from individual error and not systemic
failures) and the likelihood of it being repeated, and undertakes to ensure that the
corrected results are published as soon as possible.

Notes to the Editor

1. Murray et al: Interactive Health Communication Applications for people with chronic
disease (Issue 4, 2004, The Cochrane Library).

2. The Cochrane Library contains high quality healthcare information, including Systematic
Reviews from The Cochrane Collaboration. These reviews bring together research on the effects
of health care and are considered the gold standard for determining the relative effectiveness
of different interventions. The Cochrane Collaboration (www.cochrane.org) is a UK registered
international charity and the world's leading producer of systematic reviews. It has been
demonstrated that Cochrane Systematic Reviews are of comparable or better quality and are
updated more often than the reviews published in print journalsÂȘ.

3. In October 2004, The Cochrane Library was launched with a new interface through Wiley
InterScience and can be accessed at http://www.thecochranelibrary.com. Guest users may access
abstracts of all reviews in the database, and members of the media may request full access to
the contents of the Library.
  Reply With Quote
Old 12-06-2004, 06:49 AM   #3
imported_Joe
Guest
 
Posts: n/a
The internet has led to a more well informed and more activist patient. That is an undisputable fact, but it can never replace your physician. In fact the worlds most powereful supercomputers have not yet been able to duplicate the thought processes and decision making process of the human mind.

To totally rely on an interactive computer to diagnose and treat your illness is foolhardy at best.

Most oncologists agree that the vast amount of research being published can be overwhelming. In fact, one oncologist mentioned to me that he forsees the need for oncologists in the future to specialize in certain areas much as general practitioners do because of the information overload.

It is our obligation therefore to become our own specialists and become knowledgable in every aspect of HER2 overexpression. When a survivor uncovers some information that they feel will aid them in their treatment, they should bring this to the attention of their oncologist FOR THEM TO INVESTIGATE FURTHER.

The philosophy of the HER2 Support Group is such that we feel that each member should become an active partner in their treatment, rather than just a patient. Remember, "Knowledge is Power"

Warmest Regards
Joe
  Reply With Quote
Old 12-07-2004, 12:46 AM   #4
Vicki
Guest
 
Posts: n/a
Dear Joe,

I agree with all you have said and would like to add two other aspects for readers to consider.

The first is the ability of a clinician to bring experience to the situation and to be able to incorporate that experience with both individiual clinical findings, as well as general research findings. Research needs to have many exclusion criteria to be "pure" and to eliminate as many confounding variables as possible, so this often means that research does not always represent the "real life patient" who sits infont of the oncologist. Also the clinician gets "the feel" for a treatment (e.g. the potential for side effects with particular groups) well before research findings are known, and these factors will undoubtedly influence clinical decision making, based on a judgement of the balance between least harm for best possible outcome. (Also unfortunately not all reasearch is good and statistics are only as good as those who are interpreting them.)

The second aspect to consider is the clinician's objectivity and ability to make decisions dispassionately, free of the hindrances of our personal desires, wishful fantasies, fears, defences, denials, rationalisation, etc, and based on the best evidence for the best outcome. That is why doctors make dreadful patients (unless they willingly hand over authority to another to be involved in a mutual decision making process) as they cannot make sensible rational objective decisions about themselves. And this is why doctors should never treat themselves or their family or friends, as their decisions about self or their loved ones will be muddied by subjective concern, rather than an objective concern and dispassionate acceptance of clinical findings.

Education is great and knowledge is power, but we also need to be scrupulously honest about our own internal processes that colour our judegments and decisions.

I look forward to further discussion and the outcomes of the Cochrane review in April.

Regards,
Vicki
  Reply With Quote
Old 12-07-2004, 02:23 AM   #5
Vicki
Guest
 
Posts: n/a
"It is our obligation therefore to become our own specialists...."

I should have said I agree with MOST of what you said, but I don't agree with this phrase. (I would agree that it is an advantage to be well informed and able to discuss the various pros and cons on individual approaches.) We just do not have the well rounded background to make sense of such a comlpex field (though Paul seems to be able to make a fair stab of it, I must admit). Yes we are intelligent and educated so we can ask sensible questions, understand what is happening to us and why, and contribute to informed decision making, and yes why not discuss things we have heard about with our oncologist.... only sensible. But let's remember that the wonder drug of today may be the vioxx of tomorrow... (and I'm not putting vioxx down.... my mother has been on it for years and is suffering terribly now that she can't take it).

Regards again with my after thought,
Vicki
  Reply With Quote
Old 12-12-2004, 04:26 PM   #6
imported_Joe
Guest
 
Posts: n/a
Vickie,

My apologies, poor choice of words.


Regards
Joe
  Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is On

Forum Jump


All times are GMT -7. The time now is 12:31 AM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter