Message from the Founder
- Thread starter Ross
- Start date
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azpam
Well-known member
yes I also saw the post,got in there and started survey but they asked for surgeon's name etc. I am not that far yet. Am within 6 months-4 yrs away and haven't seen a surgeon yet so i quit doing the survey. Do we still qualify???
Personally, I'd fill the survey out for free if it advances valve technology at all. I'd do a heck of a lot more than a survey for progress.
Ross
Well-known member
Not at this time.
I'm with you, Aaron.
I don't know what the time frame is for this survey, nor do I know the desired sample size, and finally, I don't know how extensive their recruiting is elsewhere. However, I think they may need to rethink their approach in terms of eligibility requirements if they are seeking to maximize the number of survey participants coming from VR.
Jim
SHEEPDOG
Well-known member
I have some questions too.
I have some questions too.
There are some words hat don.t make sense in their rules. I sent them the following;
I have read some of the posts on VR.com regarding a survey you are running. It seems pretty simple on the surface but I have a question.
By providing the information requested above, I grant permission for employees of On-X® Life Technologies, Inc. (OnXLTI) to verify my status as a heart valve replacement candidate by contacting my heart surgeon. I give permission to my heart surgeon and her/his employees to verify that I am a candidate for heart valve replacement and/or that I have received an implanted heart valve and to verify the date of the valve replacement surgery by answering "Yes" below.
The highlighted area says that having already received a valve replacement , I would qualify for the survey. Am I reading this wrong? Either way, I am very pleased with what I know and have read about the On-X valve and recommend it to anyone that will listen to my opinion. Please let me know if I can participate.
Does that seem strange to anyone else? Pre OP or POST OP with Proof frm the MD. I guess I may be eligible. Perhaps NOT. I will let you know what the reply is!!!
I have some questions too.
There are some words hat don.t make sense in their rules. I sent them the following;
I have read some of the posts on VR.com regarding a survey you are running. It seems pretty simple on the surface but I have a question.
By providing the information requested above, I grant permission for employees of On-X® Life Technologies, Inc. (OnXLTI) to verify my status as a heart valve replacement candidate by contacting my heart surgeon. I give permission to my heart surgeon and her/his employees to verify that I am a candidate for heart valve replacement and/or that I have received an implanted heart valve and to verify the date of the valve replacement surgery by answering "Yes" below.
The highlighted area says that having already received a valve replacement , I would qualify for the survey. Am I reading this wrong? Either way, I am very pleased with what I know and have read about the On-X valve and recommend it to anyone that will listen to my opinion. Please let me know if I can participate.
Does that seem strange to anyone else? Pre OP or POST OP with Proof frm the MD. I guess I may be eligible. Perhaps NOT. I will let you know what the reply is!!!
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Ross
Well-known member
I know less then most of you do or I'd be answering your questions. It's between Hank and On-X.
L
Lisa in Katy
Ross, does that mean I definitely WON'T be getting a massage from the founder?
Ross
Well-known member
I don't know about that either. I'm just a mushroom doing what mushrooms do and pondering what mushrooms ponder.
M
Mr. Magoo
In a past life, I spent a couple of decades in the heart valve business. I came across this site and have found it to be a valuable and impressive collection of knowledge and experiences. I have frequently suggested it as a reference to patients and others who have a need for this type of exchange.
At the same time, I have had reservations about the discrete but persistent and growing commercialization of this site; most specifically by Medical Carbon Research Institute, manufacturers of the On-X mechanical heart valve.
I am a big fan of internet exchange and am all for going to a website where an automobile manufacturer can use glitzy marketing techniques to obscure reality in an attempt to get you to buy their cars. When your life is on the line however, I would be searching for a way to cut through the marketing obfuscation that so pervades our decision making these days.
I have periodically considered whether there was a behind the scenes relationship between the forum and MCRI even though it has been emphasized that this is intended to be a patient forum. The appearance of a paid patient survey on the forum removes all doubt. This is now a commercial site.
I won't get into a debate as to whether that is right or wrong, but I would like to offer up some things I learned from working with and watching surgeons implant heart valves.
1. The endorsement or perceived endorsement of one particular heart valve over others on this forum does a disservice to those patients who do not have the "valve du jour" by making them question whether they got the best possible solution. In truth, there is no good science that shows any one of the currently available mechanical valves offers superior performance over the others. A patient who gets an SJM , CMI or ATS is absolutely as well served as one getting an On-X valve.
2. Successful surgery comes from managing risk. The more one does to limit risk, the more likely of achieving a successful outcome. If I or someone close to me needed a mechanical valve replacement, the absolute last thing I would do is go to my surgeon and tell him to implant a valve that he had little or no experience with. I have been through many new valve introductions and I can say unequivocally that complications increase whenever surgeons start implanting a different valve. I would be even more emphatic about that when discussing On-X as its design is more challenging to implant. If you want a specific valve, find a surgeon who has experience with that valve. My cutoff would be at least 2 dozen cases. If there are no benefits to having one mechanical versus another, why increase your risk by asking the surgeon to implant a valve they are not familiar with? And having the company rep in attendance is not the response this forum should be promoting.
3. Every mechanical valve introduced in the last 30 years has been introduced with the prospect of no or significantly reduced anticoagulation. It is not going to happen with currently available mechanical valves. Choose whatever mechanical valve you want, but don't choose it with the expectation that in 5 years you will be able to quit taking coumadin. Alternative therapies may come on the scene. If and when they do, they will likely apply to all bileaflet mechanical valves.
4. There can be benefits and risk to participating in an anticoagulation study with lower doses or Plavix. If it includes in home monitoring, that is a very good thing. As I am sure has been discussed elsewhere on the board, consistency may be the most important key to successful anticoagulant management. If it were me with a mechanical valve, I would be all over home monitoring. All of the mechanical valves available in the US have anywhere from some to a lot of published experience with attempting to improve anticoagulation. In some studies, notably one from Cleveland Clinic, Plavix was shown to increase the risk of a serious cardiac event in a subset of patients. As I recall, it was the type of patient that would be a candidate for the MCRI study. I have wondered why they would put a valve patient on Plavix when their cardiologists have published a study saying Plavix increased risk. I don't know the answer, but if I was considering the On-x study I would dig out a copy of the CHARISMA study and ask my surgeon about it.
5. I hear talk about aspirin only studies with mechanical valves. The most prominent and most recent one that I am familiar with appears to have been discretely closed, suggesting that it was not successful. There have been anecdotal reports for years of aortic valve patients going with no anticoagulation or aspirin only. There is absolutely no good science to support this as a preferred way to go.
6. If it were me and I had decided to have a mechanical valve, my most important consideration would be the surgeon. I would choose one who does a lot of valves in an institution of high volume where you will be cared for by experienced staff. I would tell them to implant the valve that he feels most confident in and has the most experience with.
In conclusion, if there are people who want to get all wrapped up in splitting hairs over mechanical valves, have at it. Everybody needs a hobby. Just understand that any contact you have from manufacturers is biased in favor of trying to get you to choose their valve. Paying patients to take a survey that requires them to share personal information with them under the guise of publishing a paper........ I will give MCRI points for aggressive and creative marketing, but all you need to do is read the papers to see how aggressively device manufacturers are being scrutinized for paying doctors. Now patients? As I once read however, "Marketing is the science of arresting someone's brain long enough to take their money". Let's just be aware that at least one manufacturer is spending alot of time trying to figure out how to exploit the participants on this site.
Mr. Magoo
At the same time, I have had reservations about the discrete but persistent and growing commercialization of this site; most specifically by Medical Carbon Research Institute, manufacturers of the On-X mechanical heart valve.
I am a big fan of internet exchange and am all for going to a website where an automobile manufacturer can use glitzy marketing techniques to obscure reality in an attempt to get you to buy their cars. When your life is on the line however, I would be searching for a way to cut through the marketing obfuscation that so pervades our decision making these days.
I have periodically considered whether there was a behind the scenes relationship between the forum and MCRI even though it has been emphasized that this is intended to be a patient forum. The appearance of a paid patient survey on the forum removes all doubt. This is now a commercial site.
I won't get into a debate as to whether that is right or wrong, but I would like to offer up some things I learned from working with and watching surgeons implant heart valves.
1. The endorsement or perceived endorsement of one particular heart valve over others on this forum does a disservice to those patients who do not have the "valve du jour" by making them question whether they got the best possible solution. In truth, there is no good science that shows any one of the currently available mechanical valves offers superior performance over the others. A patient who gets an SJM , CMI or ATS is absolutely as well served as one getting an On-X valve.
2. Successful surgery comes from managing risk. The more one does to limit risk, the more likely of achieving a successful outcome. If I or someone close to me needed a mechanical valve replacement, the absolute last thing I would do is go to my surgeon and tell him to implant a valve that he had little or no experience with. I have been through many new valve introductions and I can say unequivocally that complications increase whenever surgeons start implanting a different valve. I would be even more emphatic about that when discussing On-X as its design is more challenging to implant. If you want a specific valve, find a surgeon who has experience with that valve. My cutoff would be at least 2 dozen cases. If there are no benefits to having one mechanical versus another, why increase your risk by asking the surgeon to implant a valve they are not familiar with? And having the company rep in attendance is not the response this forum should be promoting.
3. Every mechanical valve introduced in the last 30 years has been introduced with the prospect of no or significantly reduced anticoagulation. It is not going to happen with currently available mechanical valves. Choose whatever mechanical valve you want, but don't choose it with the expectation that in 5 years you will be able to quit taking coumadin. Alternative therapies may come on the scene. If and when they do, they will likely apply to all bileaflet mechanical valves.
4. There can be benefits and risk to participating in an anticoagulation study with lower doses or Plavix. If it includes in home monitoring, that is a very good thing. As I am sure has been discussed elsewhere on the board, consistency may be the most important key to successful anticoagulant management. If it were me with a mechanical valve, I would be all over home monitoring. All of the mechanical valves available in the US have anywhere from some to a lot of published experience with attempting to improve anticoagulation. In some studies, notably one from Cleveland Clinic, Plavix was shown to increase the risk of a serious cardiac event in a subset of patients. As I recall, it was the type of patient that would be a candidate for the MCRI study. I have wondered why they would put a valve patient on Plavix when their cardiologists have published a study saying Plavix increased risk. I don't know the answer, but if I was considering the On-x study I would dig out a copy of the CHARISMA study and ask my surgeon about it.
5. I hear talk about aspirin only studies with mechanical valves. The most prominent and most recent one that I am familiar with appears to have been discretely closed, suggesting that it was not successful. There have been anecdotal reports for years of aortic valve patients going with no anticoagulation or aspirin only. There is absolutely no good science to support this as a preferred way to go.
6. If it were me and I had decided to have a mechanical valve, my most important consideration would be the surgeon. I would choose one who does a lot of valves in an institution of high volume where you will be cared for by experienced staff. I would tell them to implant the valve that he feels most confident in and has the most experience with.
In conclusion, if there are people who want to get all wrapped up in splitting hairs over mechanical valves, have at it. Everybody needs a hobby. Just understand that any contact you have from manufacturers is biased in favor of trying to get you to choose their valve. Paying patients to take a survey that requires them to share personal information with them under the guise of publishing a paper........ I will give MCRI points for aggressive and creative marketing, but all you need to do is read the papers to see how aggressively device manufacturers are being scrutinized for paying doctors. Now patients? As I once read however, "Marketing is the science of arresting someone's brain long enough to take their money". Let's just be aware that at least one manufacturer is spending alot of time trying to figure out how to exploit the participants on this site.
Mr. Magoo
LUVMyBirman
Well-known member
Thank you for the enlightening post.
Pending sparked controversary, suspecting we will see a closed thread.
Everyone is entitled to a opinion. Your post highlights some very crutial inside information. I for one would never choose a valve because of advertisement. I look at statistics. And above all..surgical expertise.
Pending sparked controversary, suspecting we will see a closed thread.
Everyone is entitled to a opinion. Your post highlights some very crutial inside information. I for one would never choose a valve because of advertisement. I look at statistics. And above all..surgical expertise.
Ross
Well-known member
Well hello and nice to meet you also. Great first post.
I'll let Hank address this one.
I'll let Hank address this one.
Bravo Mr. Magoo.
Hank
VR.com Founder, Now just a Member
Mr. Magoo and All
Mr. Magoo and All
Thanks for the POST Mr. Magoo.
I don't see why this would warrant a deleted or closed thread.
Discussion of valve companies and issues related to heart valve replacement is why this site exists.
As long as the discussion remains civil and constructive - then it is a good thing.
I just want to clarify one thing.....
If ANY valve manufacturer were to come to me and want to publicize their product in such a way that it educates patients about valve replacement surgery and valve options...
And then gave me full disclosure of what that process consisted of...
I would review that material and proposition and consider it for what it was based on my judgement as to the value for valve replacement recipients..
Doesn't matter if it was St. Jude (which I am the proud owner of), Tyco, Valves-R-Us or whomever.
This is NOT a commercialized site. If it were - you would not be viewing it for free, I would not be broke, and I wouldn't care what anyone posted here.
Mr. Magoo.. You made one closing comment..
"Let's just be aware that at least one manufacturer is spending alot of time trying to figure out how to exploit the participants on this site."
I have a news flash for you - All manufacturers have spent years trying to exploit this site. We are the main prime target audience on the internet. If their efforts are proposed to me in such a way as to educate the patient as On-X has done.. I will be happy the be "exploited" as you call it.
You have lots of comments, but few suggestions as to what is a better way. Lets discuss
Mr. Magoo and All
Thanks for the POST Mr. Magoo.
I don't see why this would warrant a deleted or closed thread.
Discussion of valve companies and issues related to heart valve replacement is why this site exists.
As long as the discussion remains civil and constructive - then it is a good thing.
I just want to clarify one thing.....
If ANY valve manufacturer were to come to me and want to publicize their product in such a way that it educates patients about valve replacement surgery and valve options...
And then gave me full disclosure of what that process consisted of...
I would review that material and proposition and consider it for what it was based on my judgement as to the value for valve replacement recipients..
Doesn't matter if it was St. Jude (which I am the proud owner of), Tyco, Valves-R-Us or whomever.
This is NOT a commercialized site. If it were - you would not be viewing it for free, I would not be broke
, and I wouldn't care what anyone posted here.Mr. Magoo.. You made one closing comment..
"Let's just be aware that at least one manufacturer is spending alot of time trying to figure out how to exploit the participants on this site."
I have a news flash for you - All manufacturers have spent years trying to exploit this site. We are the main prime target audience on the internet. If their efforts are proposed to me in such a way as to educate the patient as On-X has done.. I will be happy the be "exploited" as you call it.
You have lots of comments, but few suggestions as to what is a better way. Lets discuss
There's more corporate entities than just valve manufacturers lurking the forum.
Bonzo Dog
Well-known member
There's more corporate entities than just valve manufacturers lurking the forum.
But Aaron, On-X are now more than mere lurkers.
Their banner atop the page and their survey on the forum indicate that. Their influence is now approved and overt, rather than covert. We could all debate the pluses and minuses, rights and wrongs of their status upgrade, but let us be observant and agree the level playing field has in fact gone.
L
Lisa in Katy
Mr. Magoo, interesting post. I agree with you and have stated similar things in my advice to patients who want a particular valve. Either go with what your surgeon is comfortable with, or find a surgeon who is comfortable with your preferred valve. Don't try to demand that a surgeon go outside his comfort zone when you are talking about your life. At the time of my surgery, I was somewhat uneducated about the whole thing, and I let the expert be the expert. If I have to do this again, even though I know a lot more, I will do the same thing.
I really don't like the "push" for the On-X valve, just like I don't like the implication by many posters that Cleveland Clinic is the only place for an educated patient. However, knowing that Hank has a St. Jude's, not an On-X, I really don't feel that it is his intention to push a particular valve, but rather, as he said, to educate. I do, however, agree that the On-X people are pretty slick and aggressive with their advertising, perhaps even to the point that they might later get sanctioned for misleading statements.
I really don't like the "push" for the On-X valve, just like I don't like the implication by many posters that Cleveland Clinic is the only place for an educated patient. However, knowing that Hank has a St. Jude's, not an On-X, I really don't feel that it is his intention to push a particular valve, but rather, as he said, to educate. I do, however, agree that the On-X people are pretty slick and aggressive with their advertising, perhaps even to the point that they might later get sanctioned for misleading statements.
Mr. Magoo's post is interesting. He makes some good points, e.g., the fact that no single valve has been shown to be superior in all cases to any other valve (citation?) Out of curiosity, I would also like to see a citation on his assertion that the ON-X valve is "challenging" to implant. I am sympathetic to Hank's response indicating that he is open to participation on the site by manufacturer's when it can be helpful to forum participants. Mr. Magoo himself may be manufacturere's representative, unless I missed his disclaimer to the contrary.
Jim
Jim
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Ross
Well-known member
There's more corporate entities than just valve manufacturers lurking the forum.
Precisely. People do not realize the real audience that is here.
I don't see how a valve survey is in anyway a marketing ploy.
I'm the owner of a St.Jude myself though my surgeon wanted to use an On-X at the time.
As Hank said, if it's educating people about valves and replacement, then were going to look at it, but if it's blatent marketing without consent, it's not going to be here long. Some members have been here long enough to remember a certain person from Edwards Lifescience and her push on their valves. What happened to her? BANNED.
Roger Frank
Well-known member
FWIW - I'm On-X #1 for my surgeon...guess I'm an experiment. I asked why more On-X units were not used, the response was "St.Jude is consistently the low bidder."
Oh well...
Oh well...
