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Would you like more doctor participation on DEZ?

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  • #16
    Yes, I am 100% in favor of doctor participation. It is extremely difficult to find doctors who truly are experienced and interested in helping patients who have the most severe dry eye symptoms--they are very few and far between, as I think most of us have experienced. I believe we should try and encourage professionals willing to help us to participate. I fear that if we put too many "hoops" in front of doctors willing to offer assistance, they will feel it is not worth the "risk". In other words, if a doctor suspects that his/her credibility or motives are going to be questioned, they are not going to risk their professional reputation simply to participate in a bulletin board. I also see very little, if any, potential gain they would derive--and even if there were, it would never be worth risking one's reputation to generate business. In addition, professionals have a much more "global" perspective to offer. We as patients try to do our best in helping one another, but our perspectives are very limited and anecdotal in nature--what works for us may not work for another, and vice-versa. Therefore I believe that having multiple perspectives--both doctor and patient--is most beneficial. Rebecca, thank you so much for seeking our opinions on this matter, and I hope more people vote!

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    • #17
      I really, really appreciate everyone's input. Keep it coming please!

      Here's where I'm at thus far:

      We'll continue to have a patients-only open forum and have forums where doctors are welcome and encouraged to participate. I am changing the basis for doctor participation to anonymous only. Doctors may use their first name or a screen name, and underneath their username will appear "EyeMD" or "EyeOD". PotatoCakes, I appreciate your reasoning on that point.

      I will start working on ways to attract more doctors to participate (as well as reps from companies with dry eye products so we can ask them questions) and I would like to ask/encourage you to asking your doctor to participate here. The anonymity will keep out anyone who sees it primarily as a marketing tool and on the other hand it will open the doors to doctors who for any reason would not want to participate here using their name.

      One further note: I've struggled a bit with the question of whether to allow professionals to use our private messaging system (given possibility of abuse). Decided benefits may outweigh drawbacks so in my first draft of a policy for eyecare & industry professionals, I've stated that they may not initiate contact with patients but may reply to questions via PM. Any concerns etc. please let me know.
      Rebecca Petris
      The Dry Eye Foundation
      dryeyefoundation.org
      800-484-0244

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      • #18
        Just to clarify . . . posters would need to have first contacted the health care professionals via PM, before the health care professionals could respond via PM? This would allow for patients to invite a health care professional to respond with a PM.

        Also, would you know that a doctor who is posting as a professional, is indeed a doctor? I would be concerned about someone trusting that they are getting medical advice valid advice from a 'doctor' via PM. This may be a none issue, however, with issues of anonymity, there is always the risk of legitimacy.

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        • #19
          I too am wary of having more docs on this site as those who do lasik eye surgery do it for money and therefore would be pursuing their own interests opposed to those of us who have suffer and continue to suffer from dry eyes as result of this surgery. If the docs are interested in research or helping patiensts that one thing, but if they're only interest is to promote their feild and bread and butter then no.
          fiddle

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          • #20
            Originally posted by fiddle View Post
            I too am wary of having more docs on this site as those who do lasik eye surgery do it for money and therefore would be pursuing their own interests opposed to those of us who have suffer and continue to suffer from dry eyes as result of this surgery. If the docs are interested in research or helping patiensts that one thing, but if they're only interest is to promote their feild and bread and butter then no.
            fiddle
            Fiddle, I went ahead and adopted potatocakes's suggestion of anonymous-only, which should effectively eliminate any abuse of the board to generate new patients. This may limit participation as they don't get any pecuniary benefit, but then, we've never had hordes of doctors flocking here anyway. And the more I think about it the more I'm liking this approach. I've tried hard over the years to keep this whole site untainted by industry, whether advertising or whatever, and this is another way to keep it 'clean'.
            Rebecca Petris
            The Dry Eye Foundation
            dryeyefoundation.org
            800-484-0244

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            • #21
              Originally posted by Hopeful2 View Post
              Just to clarify . . . posters would need to have first contacted the health care professionals via PM, before the health care professionals could respond via PM? This would allow for patients to invite a health care professional to respond with a PM.
              It could either be via PM or post, for example, say there's a doc on the board marked Texas. You could PM them and ask their name & location so that you can visit them. Or in the context of a discussion thread you could say DrX, could you please PM me your details.

              Also, would you know that a doctor who is posting as a professional, is indeed a doctor? I would be concerned about someone trusting that they are getting medical advice valid advice from a 'doctor' via PM. This may be a none issue, however, with issues of anonymity, there is always the risk of legitimacy.
              I'll be taking simple steps to confirm identity so that anyone marked EyeMD or EyeOD is actually a doctor, but no guarantees - and it is very, very important that EVERYONE understand that anything posted by a doctor on this board is not medical advice. Doctors contributing here can share their thoughts and suggestions about possible diagnostic or treatment angles to pursue (just as we do on a peer-to-peer basis), but no one should make medical decisions based on the advice of a dr. online.
              Rebecca Petris
              The Dry Eye Foundation
              dryeyefoundation.org
              800-484-0244

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              • #22
                Thank you Rebecca, that does help and I agree it can't be controlled totally but making an effort does help.
                I would love more research to be done in the field of dry eyes and sites like this one might encourage that given the number of dry eye stories here.
                fiddle

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                • #23
                  yes. By all means

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                  • #24
                    I cannot figure out how to vote, and as usual, am late to arrive, but I would love to see some dry eye specialists occasionally make an appearance. Not only eye doctors, but acupuncturists, reiki specialists, nutritional specialists, hormone specialists...I am sure there are more. There are the fair, the good and the great. I'd love to have access to the word of the "greats", and would also love to see them have access to one another. Have I thanked you lately Rebecca? Thank you!

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                    • #25
                      I agree, more docs here would be great, since the interest and knowledge is poor in many countries as well as treatment possibilities. I would like to know whats happened with all the drugs and drops in the pipeline that is mentioned in Dr Latkaneys book from 2007....

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                      • #26
                        Ya know, there's been a decent amount of doctors on here over the past few years I've read this forum. None of them ever stay very long. Why is that Rebecca?

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                        • #27
                          Hi Sunshinelover,

                          That is absolutely true. Here in Egypt for example all doctors recommend Lasik, and some say that Europeans and Americans, travel to Egypt to undergo Lasik because Egyptian doctors are genius! and well trained
                          Moreover, after the operation, it will be nearly impossible to meet the doctor again , because genius guys are always busy
                          Last edited by Ibrahim; 27-Dec-2012, 06:01.

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                          • #28
                            I personally would love to have more docs. on the forum. I think professional opinions matter greatly. I'm grateful for all the support that everyone has shared with each other but what seems evident is 2-fold. First we all want relief from our suffering and the goal of any good doctor is to do just that. Second, its been my experience that a lot of doctors look at us like a broken car that needs an oil change or new fuel injector, they don't see us as sufferers. I think that if doctors read some of our stories they'd want to do more than prescribe us drops or plugs. Bottom line, it would be nice to have doctors share some of their experiences with us so we can bring that experience with us when we see our doctor.

                            patrick

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                            • #29
                              Yes, I would like to have more doctors on the Patients/Pros site. We can't live without them! We have our ever changing eyes, symptoms, etc. We need them for tests, prescriptions, new meds, etc. Also an educated patient can help a doctor in the diagnosis and treatment and he can help other patients too. Antigua

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                              • #30
                                More doctor participation? Yes, but separate. Like it is right now. So we continue to talk openly and feel comfortable about it. But also more areas where they would be included and able to participate too.

                                The reason I would like to see more doctor participation is in the hopes of more doctor education.

                                In the short time that I have suffered from my affliction, I was appalled at the level of disinterest that was shown to me by a couple of the eye doctors, even after pouring my heart out and detailed explanations of symptoms. I am choosing to believe was due to time constraints and ignorance when it comes to their experience dealing with actual nonbook knowledge of dry eye related disorders. And how deeply it affects their patients. So in a more social setting, they would/could learn a more humane approach to bedside manners? It's what I'm thinking.

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