Summary of PCOS Support and Conference

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Barbara Nesbitt:  “Hi, this is Barbara Nesbitt, and I’m out here in San Diego at the PCOS Conference.  I have the pleasure of being with Dr. Ron Feinberg, who’s the Editorial Advisor Chairman for the PCOS Pavilion on OBGYN.net, and Dr. Walter Futterweit, who is the Clinical Professor at Mount Sinai.  Is that correct, doctor?”

Dr. Walter Futterweit:  “Yes, of medicine.”

Barbara Nesbitt:  “Of medicine, thank you.  This has been a wonderful, wonderful Conference.  There have been great presentations on all different aspects of PCOS from puberty through menopause.  I think the turnout has been wonderful, and we’ve done some wonderful interviews.  So with that, I’d like to turn it over to Dr. Futterweit who is the Medical Director of this Conference.  Tell us what you think has been going on - how do you feel?”

Dr. Walter Futterweit:  “We’ve been very lucky to have the Association and the help of all the various members who have been attending who have given their time and their expertise in defining the syndrome to those who need it the most - the patients. They have been looking for some sort of guidelines in health.  They have noticed that it is a complex disorder that not everyone agrees on everything but at least it is a syndrome that can be recognized and also treated with some of the newer modalities of treatment as well as some of the well-established ones.  Let me just summarize some of the things I think have occurred at this meeting that has been generally impressive, at least to me, and found to be very helpful to many of the attendees.  One of the new things that had been added to this year’s program and something that I and the people I had called felt would be helpful has been the use of panel discussions.  I think the interplay between the audience and the participant - the lecturer, the one who gives of themselves, not just one to one in the office but one to two hundred, has been fantastic.  The various moderators of the panels including my friend here, Dr. Feinberg, has added a lot to the Conference.  I think we’re going to see great things happen next year as well, and I’m wondering from the perspective of Dr. Feinberg what he has in mind and what he has thought of this year’s Conference.  As this is now the last day, we’re almost over, what do you think?”

Dr. Ron Feinberg:  ”Thanks, Walter.  It’s been a fascinating experience for me; this is actually the first conference that I’ve had the pleasure of attending.  I’ve been very flattered at the rapidity to which the PCOS Association has embraced me and my partner in our practice with regards to our interest in the disorder and some of the things that need to be brought out as far as information and new treatments.  So it’s been a fabulous experience for me and an opportunity to talk directly with many of the attendees and try to address specific questions that they had about their own issues.  I think that gets to the crux of what we’re trying to accomplish, and I see this in my practice as I’m sure you do as well, not just women but also their partners as well are starved for information.  We have the fabulous ability to give that information, not just at conferences but also through great websites like OBGYN.net and the PCOS Support website.  That’s really where this organization began; it began as a group of women on the Internet who came together.  Christine Gray was the founder of the organization of a group of women that came together several years ago because everyone was starved for information.  So in that light, I think one of the important visions of future meetings is to figure out the best way to get the most up-to-date and important information across.  I think we’ve done a great job at this meeting.  There’s been some fabulous things that have been brought to light - issues about pharmacologic versus non-pharmacologic treatments, debates and controversies over diet and exercise physiology that we’re still going to hear more about today, issues surrounding new pharmacologic products that are in the pipeline, and issues about pediatric onset of polycystic ovary syndrome.  I think one of the visions we’d like to see for next year is to carry on the theme of having as much interaction as possible between the attendees and the presenters.  The exact mechanisms for that remain to be sorted out but the little bit of time that we were able to devote to panel discussions, unfortunately, every single one had to be cut short.  I think we could have kept them going for a couple of hours at a time, so I think we’re going to have to think about how to incorporate that into future meetings.  I know one idea that I had presented to Kristin Rencher, and she seemed to feel positive about it, was the concept of roundtable discussions during lunches.  This is something that’s done at many of the medical meetings such as ASRM and SGI.  This is a good way too to pull a lot of other physicians into being involved by having small groups of eight or ten people sitting at a lunch table and discussing specific topics.  So maybe that’s something that we’ll be looking to explore. “

Barbara Nesbitt:  “That would be good for next year.  We do a lot of audio like we’re doing now but we also do a lot of video, and when we go to larger conferences and we have the booth, the roundtables are excellent because you get the keynote speakers that are there and they’re giving an overview of what they’ve talked about.  People will watch something that’s, say, fifteen minutes where they’re not going to necessarily on the Internet watch something that was on for hours and hours and hours so they make excellent videos, and the text from them is excellent.  So that’s something that you think you could possibly add next year as a new wrinkle?”

Dr. Ron Feinberg:  ”I think that would be a good way to look at it - one new wrinkle.  Another thing is the television industry, I know, does this very successfully with talk shows where you have debates and controversies, where I think it’s fair for our attendees to realize that many of the issues that are in the limelight right now about PCOS are far from settled, whether you agree with the position or not but essentially having experts in the field debate different issues.  I’d love to see debates with regard to the appropriate diet that women with PCOS should be following, or debates about different forms of exercise that’s become a little bit more controversial, aerobic exercise versus weight-lifting and things like that.  Debates over pharmacologic treatments and when there’s a role, debates over appropriate treatments to induce ovulation - fertility treatments.  We tend to be a little bit down on in vitro fertilization and the higher tech industry but, in fact, there may be an appropriate role, so there are a lot of issues.  Even future health issues, as many of our patients are getting older and heading towards menopause - concerns over their health.  So there are many, many topics that we could have panel discussions on and that might be a method to provide more information than actually having more formalized lectures, so we’ll have to see how it goes.”

Barbara Nesbitt:  “Dr. Futterweit, OBGYN.net started out as a medical website for physicians worldwide and we now have a women’s section which is quite big and the purpose of it, and people sometimes laugh, but the purpose of it is to educate physicians as well as to educate women.  I’m not assuming that I’m out there educating them but we go to places like this which is a form of education when these audios are up.  How do you feel that the PCOS sections, say, of OBGYN.net could help in this coming year educate obstetricians and gynecologists to help their patients when they come in and they are possibly a PCOS patient?”

Dr. Walter Futterweit:  “I think you have a start in that there has been a great number of physicians who are in reproductive endocrinology who are obviously interested in PCOS.  The fact that you have made it more available to physicians has eased to a great extent some of the possibilities of not having enough publicity or at least public awareness.  In many ways, and it is true, the reproductive endocrinologists gets the insight now also from medical endocrinologists and it is as it should be a unified approach to the patient.  We all may have different views but we should listen to the other, and having said that, I think this is one of the things that has happened in this Conference and one of the reasons why you have such a success on the website.  I think it will continue to grow, and I think it should be more widely made available to outside people. There should be links going to it on various websites and on doing so the sole benefit and the most important benefit of all is the patient who has the syndrome who will be benefited by viewing it and by gleaming the information that they can from the Internet.  Let’s not kid ourselves, many patients who see a physician, look up the physician before they see him, they read about the entity, and often they diagnose it themselves.  This is the age we’re coming to, it’s not the old - let’s see a doctor and see what he thinks.  They already have an idea of what they have so things are changing.  This is the year 2000, and things will change even more and we have to accept the fact that this is the way communication and media are going to help in the essence of good public health and the maintenance of health.”

Barbara Nesbitt:  “This view is the exciting part, when people say where is the Internet going with medicine – to me the exciting part is your patients will be educated or better educated, a lot of physicians that got out of medical school ten or fifteen years ago will have the opportunity to get re-educated on new things that are going on, and I find it a very exciting thing.  I don’t think it’s ever going to end.”

Dr. Ron Feinberg:  ”Actually to ditto what you both said, I’ve noticed in the last couple of months since many of the articles have come out realizing this isn’t Internet per say but public awareness articles about PCOS whether it’s been in Women’s Day or Ladies Home Journal that when patients call our office, and in a gentle way our receptionist still asks - why do you want to come to see Dr. Feinberg or my partner Dr. McGuirk, they’ll say - because I think I have PCOS.  Actually it makes our job a little bit easier because if the patient has done reading in advance, then we don’t have to start out in a very elementary fashion discussing it, and we can kind of cut right to the chase.  The patient will buy into the tests that we think are important or the things during physical exam that we believe are important to look for and understand also that they’re not alone, that they’re a part of something that’s actually pretty common.”

Barbara Nesbitt:  “You have a fact sheet on the PCOS Pavilion that you’ve written and it is a wonderful thing.  A patient can read it, print it out, and read it fifty times and then go into see you.  Am I correct?  I’ve been told a lot of times physicians like OBGYN.net because they don’t mind when their patients go in there and read something because it is reviewed by Advisory Boards like yourself being the Chairman of one, and hopefully we don’t have anything on there that a physician wouldn’t want their patient reading.  So you say educated patients are good.”

Dr. Ron Feinberg:  ”Yes, I think the hardest part with OBGYN.net is not only keeping things updated but keeping things archived and even being able to find all the information that patients want so, yes, I think the more that patients have that they can read and learn about is good.  I love it when a patient comes in very informed about what’s going on with their bodies and what they think may be going on.”

Barbara Nesbitt:  “What’s easy to say, and I hear it a lot but less as time goes by, but it’s easy to say there’s a lot of junk on the Internet.  You can say there’s a lot of junk on television but if you only watch the Discovery Channel, I doubt that you’ve seen too much junk so if you only go into good websites like the PCOS Support Association’s website, a good medical company’s website, or our website and you’re getting good information, I say let’s stop saying the Internet is full of junk.  Let’s say don’t go to the junk go to the good places that have good information.”

Dr. Ron Feinberg:  ”The big issue would be how to maintain that or how to provide the seal of approval, if you will.”

Barbara Nesbitt:  “But you have a good website, and that’s how we met.  I think the first time I wrote to you because I had been into your website and it was a good website.  It was when we were building the Infertility section, and that’s how I think we met Dr. Perloe, he has an excellent website.  So physicians that are involved in the Internet are interested in it and have good information out there, that’s who we’re interested in and that’s who we work the best with because we’re all into the good of the patient.  So next year, I guess I digress dear, you are going to be having Dr. Futterweit’s position as Medical Director of…”

Dr. Ron Feinberg:  ”I look forward to his wisdom and his kindness in showing me the ropes of making a very successful conference for next year.”

Dr. Walter Futterweit:  “I’m sure it will be, and I’m sure you’ll be able to handle it well to a great extent yourself but anytime you need any kind of help, I’m always here.”

Dr. Ron Feinberg:  ”That’s great.”

Barbara Nesbitt:  “For this support group, you have opened up your facility to them in September, am I correct?”

Dr. Walter Futterweit:  “Yes, I’m on the Medical Advisory group, as is Dr. Feinberg.  It’s wonderful now that the north-east area has really been blossoming, and hopefully, it will continue to do so by having about three or four conferences a year, support conferences, with noted speakers.  There will be a major conference sometime in September at the Mount Sinai Medical Center, and we hope to make it quite a memorable event and something that many of the members of the websites, both yours and the PCOSA’s, will come to and learn and be able to take home a lot of messages from.”

Barbara Nesbitt:  “I’ll be happy to announce it on the site.  I think we should invite physicians to come too because I think you people have a lot to share with them.”

Dr. Walter Futterweit:  “Interestingly on the last event we had about a year ago, most of the endocrine fellows and many of the medical students at the Mount Sinai School of Medicine attended it and it was quite an event, they learned a lot.”

Barbara Nesbitt:  “Thank you both very much.”