IAS Site - Proper Use and Recent Postings

From: Dawn (dawn@naisp.net)
Thu Jul 10 11:01:19 2003


At Thu, 3 Jul 2003, Dr. David Wiseman wrote: >
>(The following was also emailed to everyone who was copied on recent
>email correspondence. This really is the last word on this issue and
>has already taken a number of people away from being able to help ARD
>patients. Let's not initiate a round of email and postings on this or
>any other web site, but let's get on with the business of solving the
>problem of ARD and helping ARD patients. Let's keep this a pleasant
>site for people to visit- DW)
>
>--
>__________
>Dear All
>
>We have been increasingly concerned for some time about the improper use
>of the IAS web site and its message board. These concerns have come to
>a head recently with some postings as well as behind-the-scenes email.
>Such correspondence is highly counterproductive, and detracts from the
>atmosphere we wish to engender, namely that of a caring environment
>where ARD patients can obtain help and support.
>
>Since some of these issues relate to discussions concerning Dr.
>Kruschinski of Frankfurt, I have contacted him for his thoughts on these
>matters. He has expressed his concern regarding these developments, as
>have a number of other doctors and patients that I have interviewed.
>
>Accordingly I want to make the following observations and comments. Both
>Dr. Kruschinski (who has reviewed and agreed with this document) and I
>ask for your cooperation so as to enhance the proper utilization of our
>web site for its intended use, namely to help patients suffering with
>ARD.
>
>Please understand that every time one of these issues flares up, we
>consume vast amounts of time, time that could be better spent advancing
>the cause of ARD.
>
>1. The IAS does not endorse any one doctor or health professional.
>There are a number of doctors who advertise on our web site, as well as
>a number in our database that we provide in response to specific
>enquiries. Ultimately the patient must make their own decision as to
>which practitioner may be appropriate for them.
>2. The IAS will not permit any form of unapproved solicitation or
>advertising on behalf of any health professional (or other business
>entity), regardless of whether that entity encouraged (expressly or by
>implication) that solicitation. No patient must feel pressured in any
>way to make promotional postings or emails or to conduct other
>activities on behalf of any doctor. We caution doctors to understand
>that patients suffering from ARD are particularly vulnerable to even the
>slightest suggestion, and that even though doctors may not intentionally
>pressure patients, patients may feel pressured nonetheless. We have
>instances where patients have felt that their ability to receive
>follow-up care from a physician would be jeopardised if they do not
>comply with the physician's actual (= unethical) or perceived demands.
>3. Our web site is not a place to make any disparaging remarks about
>anyone, including physicians or other patients.
>4. It is acceptable for a patient/board member to make ONE posting on
>their return from a particular doctor to express their appreciation for
>the services of that doctor and his/her staff, and to inform others
>about their progress. It is also acceptable for a patient to make ONE
>posting to announce that they will be having treatment (including a
>course of treatment) with a particular doctor. However these postings
>should not become excuses for responses to be made which are clearly
>promotional in nature.
>5. Of course it is OK for people to inquire about the progress of one
>of our members during any course of medical treatment, or for a close
>friend to give periodic updates about someone in hospital and an address
>to send flowers or cards etc.
>6. Multiple postings which promote any entity are unacceptable,
>including responses to other postings which gratuitously (in other words
>for no bona fide reason) mention the name or web site of an entity in a
>promotional manner.
>7. It is unacceptable for posts to be made (or email messages sent),
>attacking anyone for their choice of doctor, or for the advice they
>give. There will be differences of opinion on matters of fact, and
>these should be expressed with politeness and courtesy.
>8. There will be situations where someone will say something that is
>offensive to you. Please resist the temptation to engage in an all out
>war of words or to launch a pre-emptive strike. First of all read the
>"offending" post. Make sure that you understand it properly. Does it
>really say what you think it said? Did you ask someone else if they read
>it the same way? Did the person misunderstand something? Did you say
>something first that might have provoked this? Please give them the
>benefit of the doubt. A polite, short and private email that does not
>copy the rest of the world may be a simple way to resolve the
>difference. And if you are the "offending" party, do not take such an
>email as an act of war. Both of you try to come to a mutual
>understanding even if you do not agree, and post a nice message
>acknowledging the difference as well as a respectful note that you will
>agree to disagree. Most of all, write your response, proof read it,
>sleep on it overnight, correct it and then send if you still think that
>is necessary.
>9. We do not encourage correspondence between physicians and patients
>other than that required for the patient to receive a good or superior
>standard of care. The traditional boundaries of the physician-patient
>relationship must be preserved in order to ensure that s/he is able to
>remain objective and impartial at all times. In any case all
>correspondence should in any case be kept private
>10. No project (survey, campaign etc.) may be announced or initiated on
>the IAS web site without our permission. This includes solicitations
>made by harvesting email addresses taken from the web site.
>11. Although we have not done so until now, we reserve the right to
>block or disbar anyone who does not adhere to these rules, and will take
>action against anyone who attempts to circumvent these rules by, for
>example, using multiple email addresses. Where violations involve
>medical practitioners, we reserve the right to lodge an official
>complaint with any professional society or credentialing board with
>which that practitioner may be associated.
>12. No doubt situations will arise which do not fit squarely into any
>of these rules. Please use your common sense as to whether you are
>violating not just the letter of these rules, but also their spirit.
>13. If there are legitimate questions raised on the message board about
>how someone may contact a Dr. X, then we request that a short response
>may be made advising them of that information. If it concerns one of
>our advertisers, it is appropriate to send them the link to the
>advertising page.
>14. Please note that these rules have been in place for some time,
>rules that are based on those established by well-known web sites such
>as Oprah Winfrey's. We are merely bringing to your attention a few of
>the policies that are relevant to the present situation. For a complete
>description of our terms and conditions, please see
>http://www.adhesions.org/terms_conditions.htm.
>
>I am going to expand on some comments I made a few months ago. In many
>other parts of the world, a product can be approved for sale on the
>strength of animal experiments alone. In the USA the FDA usually
>requires that scientifically conducted clinical trials are performed in
>humans. There is good reason for this since the FDA has a duty to
>protect the public health, and until a scientific clinical study
>demonstrates that a product is safe and also works, the product cannot
>be sold. Even then, problems may arise once it is used in thousands of
>patients, as opposed to just the few hundred that participate in the
>clinical trial. FDA aside, the GOLD standard by which we judge a
>product is the "double blind, randomized, controlled clinical study".
>
>Until we have such data, it is difficult to make any real conclusions
>about the product. Very often we receive reports of clinical studies in
>their early stages, say with 20-30 patients or so. These may certainly
>provide encouragement, (as is the case for example with Spraygel in the
>hands of Dr. Kruschinski and others) but it would be premature to
>conclude definitively that a product works or does not work until a
>study is complete. These reports may provide enough encouragement for
>some people to try that product, if their condition is bad enough that
>it may be worth the risk. For example we have had a number of patients
>visit doctors in Europe in order to have INTERGEL, or SprayGel, products
>that are, or were not approved in the USA, at the time. AS MUCH AS WE
>MAY BE ENCOURAGED BY INDIVIDUAL STORIES ABOUT PRODUCT SUCCESS, WE CANNOT
>SAY THAT THE ONLY TREATMENT IS BY DR. X USING PRODUCT Y. We must also
>remember that absence of adhesions at a second look laparoscopy may not
>translate into a long term remission from pain. We have evidence that
>adhesions may recur (eg because of undetected endometriosis) or that
>pain, possibly unrelated to adhesions, may be temporarily suppressed,
>only to return several months after surgery. It is therefore imperative
>that we study not just the short term effects of these new treatments,
>but also the long term effects.
>
>Please understand how much damage one can do to a doctor with a
>promising technique, or to a promising treatment if one does not
>exercise the right amount of caution in speaking about him or it. Any
>"over promotion" without data, regardless of whether it is initiated by
>the doctor or the patient, will be viewed by the medical community as an
>attempt to make baseless claims about a treatment without proper data.
>This relegates both the doctor and his/her treatment to the status of a
>snake oil salesman and his product In this regard, I fear that Dr.
>Kruschinki's reputation as a surgeon, may have been damaged to such a
>degree that the possible benefits of his novel treatment may be not get
>the proper consideration that it deserves. This would be a terrible
>tragedy because it would deny ARD sufferers all around the world the
>opportunity to benefit from what may be a perfectly good treatment.
>
>For patients suffering with severe ARD (Adhesion Related Disease) there
>is an understandable desire to try the latest product under
>investigation. Many people have volunteered for clincial trials. It is
>your right to do so. But PLEASE remember that until we have had the
>results of properly conducted clinical studies, we cannot draw any
>conclusion about the product. INTERCEED and Seprafilm all have good
>points, but none of them is perfect. SprayGel and ADEPT show good
>promise but we do not have large enough clinical studies to make good
>judgments yet. We have more recently in INTERGEL, which has possibly
>been linked to some adverse events, a perfect example of why one should
>not jump to conclusions.
>
>Furthermore, many of these products are tested in patients that do not
>have the severe form of ARD, but we hope that sooner or later such tests
>will be performed. NO MATTER HOW PROMISING A NEW PRODUCT SOUNDS, NO
>MATTER WHAT YOU HEAR ABOUT IT FROM OTHER PATIENTS, PLEASE REMEMBER THAT
>NOTHING IS FOOLPROOF. THE PRODUCT MAY NOT WORK IN EVERYONE, INCLUDING
>YOU. At the same time we must encourage and applaud all the companies
>(eg J&J, Genzyme, Confluent, ML etc.) who do this type of difficult and
>expensive work, because it adds to the body of knowledge about adhesions
>and it increases awareness. The same should be said about doctors. Even
>the best doctor, with the best techniques will produce adhesions. They
>do not have magic wands, and the most we can hope for is a doctor who
>will take the time to learn as much about the problem as possible and to
>apply that knowledge help his patients. Please let's encourage the
>medical community to ask these questions and let's try to educate them.
>
>In the case all the surgeons who work on severe ARD, I have repeatedly
>encouraged all of them to properly document their results and submit
>them to the scrutiny of the medical and scientific community in medical
>journals and at medical meetings. Without going into lengthy details,
>all of these surgeons know that there are certain requirements that must
>be met in this regard. A poorly conducted study by unqualified
>individuals, such as the one posted on our message board recently and
>without the proper controls will cause more harm than good. It will
>detract from the credibility of the doctor and its findings, again
>relegating both to the status of snake oil.
>
>It is for this reason (in addition to it being a violation of the IAS
>web site rules) that Dr. Kruschinski has agreed with my decision to
>remove the recent posting apparently made on his behalf announcing a
>survey of patients who have had treatment with SprayGel.
>
>Instead it is our intention to invite other surgeons to participate in a
>scientifically conducted study of the effect of surgical treatment in
>severe ARD patients. Such a study would be designed and executed
>according to the highest standards of research. This will require
>funding, between $30,000 and $75,000, . If you really want to help, you
>can do so by helping to raise these funds.
>
>I thank you again for your support and hard work. Let's concentrate our
>efforts on providing support to ARD patients around the world, whatever
>it takes.
>
>Sincerely
>David Wiseman Ph.D., M.R.Pharm.S.
>Founder, International Adhesions Society (IAS)
>http://www.adhesions.org
>david.wiseman@adhesions.org
>

--
I'm no doctor, just a fellow sufferer like you but I hope you consider me a new friend.

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