iSpine, Global Patient Network and Mark Mintzer

[mmglobal]

I am the founder of this new internet community: the International Spine Patient Information Network. I am also the president and founder of my company, Global Patient Network, Inc. Both of these entities have the same goal: to help enable spine patients to gather and process the information they need in order to make informed decisions about their treatment options.

Susan's post here, prompted me to write this post. It's long overdue and I've written several iterations of this, but never quite got it right. Well, it's still not perfect, (sorry for the length,) but it's time to get this out of the way. I hope to make it very clear about the relationship between Global Patient Network, iSpine and Mark Mintzer.

I started researching and posting in the internet spine patient community in the year 2000 a few months after my first spine surgery and when I was about to undergo a 2-level 360 fusion. I believe that the MGH Spinal Disorders forum provided me with the information I needed to enable me from submitting to the wrong surgery. I researched endlessly for the next two years when I went to Germany for my 3rd spine surgery. Because of the amount of research I did and the quality of information I shared on the internet, I was recognized in the patient community as a valuable resource. ADR surgery, no less multiple level ADR surgery overseas, was still unheard of. The interest my case generated was overwhelming. After returning from Germany, I was inundated with requests for information. I shared it all freely, spending 20 to 25 hours every week fielding questions from spine patients all over the world.

In early 2003 I started the ADR Yahoo eGroup. It was the first internet patient community dedicated to new spine technology. It took off like gangbusters and soon outgrew the Yahoo Group, so we moved it to another internet patient forum. At this time, I had already started attending surgeons conferences and was developing relationships with many of the top spine surgeons in the world. I had no designs on doing this as a business. I was doing the same thing I did before my surgery,,, researching spine and sharing what I learned with people who were suffering as I had suffered. This all became so time consuming that I tried to distance myself from it. When I did so, I discovered a few things.

1. I enjoyed what I was doing and did not want to stop it.
   
2. I was good at it.
   
3. I was helping people in a very meaningful way, often providing information that made the difference between a life of disability and pain; and recovery for many people. I want to make it very clear that often times, the information came from the patient community. I know many lives that were saved because of other patients who came to share their experiences and their knowledge. This is not what I do... this is what the community does. You saved my life and many others!

Fast forward 3 more years. I'm still working full time for the patient community. I'm still doing the same thing that I did before anyone ever dreamed of GPN: learning about spine and sharing what I know freely with the patient community... only now, I can do it better than ever because I have access to the most amazing resources. In the last few months, I've attended the Spine Arthroplasty Conference in Montreal and the North American Spine Society meeting in Seattle. I've observed and scrubbed in on spine surgeries with the two most experienced ADR surgeons in the world, and with three of the most experienced ADR surgeons in the US and with the inventor of the first artificial disc, and... and... and... I'm constantly seeing new types of spine surgery and new technologies. I have many clients with a variety spine disorders... not just needing ADR. I love what I do and live a very interesting and exciting life. And, I get to do this while helping people who are facing chronic pain, disability, and the inability to get the appropriate care that they need... as I faced these issues myself years ago. There is no way for me to communicate how gratifying my work is.

So what's this post about? For some in the patient community they see a huge conflict of interest here. How can I function in the patient community, while my business depends on the patient community to provide my living? For me, it's easy because I'm doing the same thing that I did for years before GPN existed. I know where my heart is. For those who have worked with me for years, there is not problem. They remember how helpful I was and how much I supported them long before GPN was conceived. They remember telling me that I should be charging for what I do. They know where my heart is.

While I am GPN and I am the founder of iSpine, I intend to keep them separate. I'll continue to do as I have in the past... just post useful information as I get it and answer questions to the best of my ability. I ask my clients to keep all GPN business off of iSpine. I will not, nor have I ever, advertised by posting on an internet forum. I will not, nor have I ever, spammed forum members.. However, if I have unique information that pertains to your case, I may contact you and share it with you directly. These cases are very rare. For full disclosure: GPN is my sole source of income. I've pursued it full time since the idea was planted by my then unpaying clients, back in 2003. I work for spine patients helping them to sort out the information they are getting. I also have a system for presenting your case online that saves the patients time and money. I often travel with patients for their surgeries, doctors appointments and testing.

In the internet patient communities, some forum moderators have asked that I not mention GPN. I have honored their requests and people complained that I'm hiding my business. Some forum moderators have asked that I keep my business interest up front and in the open. I have honored their requests and people have complained that I'm using the forum for advertising. Those who are experienced on the internet (or in life for that matter) will understand that there will never be a mix that keeps everyone happy. It's even worse in the patient community because many of us are in pain, depressed, scared, etc... While there are several active patient communities out there, I believe that there is still a need for a place where spine patients can gather for a unique mix of technical information, community support and support from the medical community as well. iSpine will be non-profit organization that will operate without offensive advertisements. It will be run by the patient community, for the patient community. All members who post in a positive manner will be welcome.

So, this is the internet. It's a mix of useful and useless information. A mix of nuggets of gold and a waste of our time. If you like what I do and think I may help, then use my services. If you don't... then please do not. If you like the forum, then please come on in, take what you need and share what you can. If you don't like it here, then please find somewhere else that you are more comfortable. I intend to take a pretty light approach in moderation of iSpine. The only thing I'll insist on is that we all post in a positive manner. Posts should be for the benefit of the community. Most of us here are in a fight for our lives. We are after information that can help us to recover something of ourselves. I hope that iSpine is helpful to all of you!

Mark

[mmglobal]

testing my new signature file.

[Poncho]

I just want to add here that I witnessed the activity online by Mark just prior to his surgery with Dr. Zeegers in Germany and thereafter This was way before ADR became well known here in the US.

I followed his case closely and his progress. Mark was kind enough to share all the information he had at the time regarding ADR and the process of preparing for going abroad. Without being charged. Thus, I am a living testament to the things Mark is saying about helping other patients after receiving ADR because I was one of them.

[JeffreyD]

Well stated, Poncho.......same goes for me.
Mark and the services he provides are a positive blessing. What he has done and is doing with GPN is a situation where every aspect of what Mark does and who he is is based on working for the benefit and service of the individual needing help.
Anyone who feels otherwise just needs to get to know him better.
-Jeff

[fortitudine]

I am forever grateful to Mark for everything he has done for me. I am perplexed by any negative comments as I believe his heart is with us spiney patients.

[Eddie G]

Unfortunately for some people who could benefit from my recovery progress and films on the other site (you all know which one) I think I am finished with posting over there. I posted my password & user name over there as I did here for people to see my spine films and it was deleted. WHY! That info may help someone! Exchange of information is an important and wonderful thing, especially when it concerns someone's life and if I choose to post my personal info it is my choice. Apparantly someone *COUGH COUGH HARRISON COUGH COUGH* has a problem with Mark over there and their pride is more important than helping people. Isn't that what we are here for? To help and support each other? I'll probably be banned over there now too for speaking my mind over here, but that would just prove my point anyway. Mark has a wealth of information to offer and any website that would ban him is clearly doing a disservice to every scared "newbie" coming in to get answers. Years ago when I saw all the people with the exact same problem as me, it was comforting to have a place to ask questions and get opinions from many different people. I like looking at other people's films as I am trying to learn more & more about our condition and new procedures being offered.

Mark does great work and is a calming voice in the eye of the storm. I know exactly where he is coming from by wanting to help others by sharing his experiences & thoughts. I wish my hospital (NYU) would have allowed him to be in the O.R. but it was against hospital policy. It would have been worth every penny (even though everything turned out fine) just to have him talking to my family members and keeping their stress level down. Over the phone is fine too. Nice job Mark! Keep up the great work!

Voice of Dice Clay: "I'm ova here now! Ya hea"

[mmglobal]

Thanks for all the kind words everyone.

I'll ask everyone not to post anything negative about other forums. It does not serve anyone.

The purpose of my post was to make clear the relationship between the forums and what I do for a living. I realize that I'm damned if I do and damned if I don't. If I keep my business hidden, it's 'lurking in the bushes'. If I keep it open, it's advertising.

I prefer keeping it all open and honest... let every individual make their decisions.

Mark

[dshobbies]

Mark,

You changed my life. While this and other forums afford us useful information, one thing that remains an unknown to new users and adr patients is you and your business. Yes, understandably you want to keep the two separate, but those who don't know about you, can't decide for themselves if they could or want to benefit from your services without someone telling them directly. Perhaps you could put an advertisement on the forum or start a new catagory of leading adr specialists, including GPN. Had it not been for others telling me about you, I don't know where I'd be today. You can't help those who don't know about you!

At least consider it or some way of informing the uninformed.

Dale

[CurlsGirl]

G'day from Downunder Mark!

I am so glad I found my way here! Mark was so supportive of my thirst for knowledge as I sought solutions for my spinal problems and an ADR surgeon here in Australia. I valued the friendship and the knowledge you so freely shared and am proud to be onboard here. Congrats on the new forum.

Happy days
Dette

[mmglobal]

Several people have requested that I post about GPN, iSpine and my role here. I'm bumping this to the top... done over 2 years ago.

I can't write more now... on my way to the seminar. This should lay it out. 501c3 paperwork was completed in summer 2007, is still being processed and will take several more months for IRS to complete.

I hope the original post says everything I need to say.

Mark

[SandyW]

To All on iSpine,

I totally agree with everyone's post thus far. I'll try not to repeat, but I, and many others, know that the spine community is richer for Mark's contributions.

I have mentioned Mark's paying job recently because I didn't think many people knew about it and thought they might be able to benefit from it.

I have received help from Mark and have never paid him a dime. I've joked "why should I pay when you work for nothing." I wish that I would have been able to pay for Mark's personal help when I was in Germany. My husband and I are not world travelers nor very savy concerning medical issues. We knew about Mark, but were told we could handle it. We were mistaken; if I had to do it again, I would find some way to retain him.

I can't fathom why anyone could complain. How many hours does Mark spend helping us here and all he gets is a "thank you" and maybe not even that sometimes. Ok, I've gone on too long.

AND before I forget! Thank you Mark!

Sandy ** p.s. Like your new signature

[Kathy]

I can tell, from the little I know about Mark, that he is very helpful to all of us and very humble. Mark- I have no idea how you do GPN and manage to post on here and help all of us. I personally don't think it is a conflict of interest, I'd say a passion. It sounds like GPN runs a lot like my hubby's buisness, referrals, which is the best compliment one can receive! Thank you for this great forum and all that you do for spineys everywhere.

On a more personal note, I love the profile pic, she is absolutely adorable.