-- __________ Dear AllWe 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