APPROPRIATE & INAPPROPRIATE PATIENT COMMENTARY POLICY

[Trish]

My 2 cents about the rumoured legal issues:

1. It's libel, not slander. Libel is written, slander is spoken.

2. Among other things, in order for it to be libel, it must be a false statement. I don't see any reason to believe these are false statements, merely uncomfortable ones.

3. If anyone wished to sue Harrison or adrsupport.org they would have a hard time proving causation, i.e. that Harrison's actions or inaction was resonably linked to the libel. It is not the same as a newspaper where the editor is responsible and decides upon every word of its content.

4. Generally people only sue if their is money to be had.....and it sounds like all the parties are poor as church mice.

5. Harrison, ss non-profit org, in the US anyway, no judgements against it can touch your personal finances (house, car, etc....) so long as the paperwork is in order. I believe it is very similar in the UK, even though our legal systems have been seperated for a few hundred years.

I see no real danger here.

Sincerely,
Trish
(a licensed American attorney)


As for the rest....I am getting lazy in here....my life is calling to me to get away from this computer....so I will just say I concur wholeheartedly with Lindsay.

[kanutta]

I think one has to ask oneself who the forum is for:

"is it for patients or is it for surgeons?"

If the answer is: "for the patients", then the patients must be allowed to tell their story and allowed to own their patient history without interference.

That said; I have been a moderator at a chronic pain board a couple of years, and know that running a board is not easy.
I decided to quit as a moderator; essentially because the board didn't play by democratic principles. Boardowners are not forced to do so, but it will benfit the board in the long run if democratic principls are followed there, as in "real life".
Internet is quickly becoming "real life" for more and more people, and ethical issues will come up as internet becomes an everyday medium just like TV or newspapers.

Yes there are rules on a forum; but rules are subject to interpretation, and don't neccessarily guarantee justice.

Ethical standards will always go further and above law and rules.

We can have lawful rights to do things, but it isn't always ethical uf us to do so.

This forum is a great ressource, and I tell the norwegian spineys looking for ADR information to go here, I link to this forum; it is the best place on the internet in my opinion.
Because it reflects the reality, both the good and the bad outcomes. And open discussion! that's so important to keep a forum live, and that's how we learn more about a subject,... by discussing it.

I think you have made a mistake Harrison; with Anastasia and Matt, and that you should make it right.
You do a lot of good work with this board, and I like the others am very grateful for it. That we critizize you for these latest happenings on the board, doesn't mean that we are not grateful for what you have done and are doing for spine patients.

But I agree with Lyndsay and Tmont and several others here, if this is going to be a community in the right sense of the word, it can't be brushed under the carpet.

There are so many people here that contribute with their experience and intelligence, and I would hate to see them take resentment to the board and stop contributing.

There are bound to be conflicts from time to time on boards like this; people in a vulnerable life situation; living in great pain.
There is also something called timing; and the timing couldn't be worse as I see it. I remember when I was newly operated; you don't need extra stress like all this.

Anyhow, I think Anastasia must be allowed to own her own story, that's what it boils down to.

Hope it will all be sorted out, and that the board will continue to be the great ressource for ADR-information as it has been.

[Harrison]

I think you have made a mistake Harrison

It's interesting you say this, knowing the "mistake" I made was editing the Subject Headers of multiple topics in the post-op forum. None of the other patients complained -- as this policy is clearly stated in the first topic in the Post-Op forum.

I wish I could share the emails and private messages from others here, but I don't care to make this an even more explosive issue. For those of you that have emailed, I appreciate your advice in handling these extraordinary issues.

I will however, seriously comtemplate closing down this board either temporarily or permanently. I am disgusted with the misinformation and lack of respect I've seen in the last few days.

[tmont]

If it's too much to handle and you're not prepared to address posters' valid concerns, Rich, then I would fully support such a decision on your part. Without a Moderator willing to at least listen to criticism and discuss the solutions without going into a surly huff,then a big part of what made this Board worthwhile is already gone. It will only be a matter of time before it will be exactly what 'interested and biased persons' want it to be. Close it down; the sooner the better, before it starts to mislead patients, which would be the next step.

To be fair: your position between a rock and a hard place is not an easy one; I do empathize. But you should understand that people are speaking up because this is THEIR PLACE and they care about it, thanks to you--but also to us all. I ultimately will side with patients--and I do hope you will ultimately chose patient rights and freedoms, even if there is a price to pay which no one else but you assumes. As it is, this policy concerning post titles is neither logical nor universally applied; all you have to do is dig and (as of this morning anyway), there are several testimonials which do not fully comply with your rule.

You thank those who email with suggestions behind the scenes, but have not addressed my open one concerning the categorization of posts, and I've offered it twice. Will you or will you not consider it? Or any other coming from people who care, but who disagree? Are we all then bannable? Is any sort of dialogue possible here, or will you continue to apply the 'iron fist principle'?

Trace

[KL Aguilar]

I have not been heavily involved with these issues, but I agree with what Trace, Lyndsay, Kanutta, and a few others have said (I can't see all the names right now). I support having Anastasia's post title changed to something like "One Year in Hell After ___ (insert level and name of ADR device."

If this forum is not going to be a voice for patients and their stories, both positive and negative, and if it can be censored for trivial reasons, it serves no purpose.

I hoped to find help and support in researching my options, and to share my experience as a cervical MISS success story until I suffered a new injury.

Instead I find that patients who had disastrous results from ADR are attacked and victimized even more. I have never been to either Alphaklinik or Stenum, but find it very strange that several negative stories about Stenum are encouraged, but the same criticism of Alphaklinik is treated very, very differently.

I have been on spine forums since 1996 or 1997, starting with MGH Spinal Disorders. Although this is the most comprehensive ADR forum, there are other spinal forums which are run more objectively.

And finally, to have my previous very calm, constructive criticism to be labelled a selfish rant and to be reprimanded in public is a little too much. How can speaking up for a victim make one selfish???

And since I am undoubtedly going to be banned or made to feel unwelcome by being scolded, here is my e-mail address for anyone who wants to remain in contact: AguilarKL@aol.com

[Harrison]

Well, it is good that this topic has become a vehicle for some to voice their concerns -- I am all for healing and some kind of catharsis here.

Trace, your suggestions are practical -- but I don't think emoticons are supported in the topic titles by Groupee. Great suggestion, and one of many that have been acted upon. Should I tug at your heartstrings and explain all the things I had to do this weekend -- that have nothing to do with this discussion?! Of course not! Bottom line: less sleep and time with the family.

And should you be asking for lurkers to post, that will only add to this controversy. But they may...and only make this discussion eternal. Or infernal.

Folks, this is not FOX or CNN. I/we don't have time for this. More specifically, I posed a question earlier which went unanswered: what is the amount of time I should spend on this issue or 2-3 new patients. It went unanswered, because it is a tough, seemingly rhetorical issue. The other reason is that very few people know the amount of time I spend researching answers for new & recent members.

Not complaining here... just explaining. I am learning and changing my views as I go through this process -- but it may not be for the better.

Who should make the rules in the community: the majority or the minority? I already addressed this three years ago. See the terms of service link below.

As not to appear the inflexible curmudegeon, I am happy to defer my moderation responsibilities to someone else how can offer the same degree of dedication, time and intelligence that I have in the past three years (I am very serious) as the moderator. Email me if you are interested; while I still ponder the fate of this board.

[joeytoey]

I am fairly new to this board as you all know. Perhaps I can be a sort of neutral intermediary.

I'd like to propose a compromise between the opposing parties regarding the issues of thread titles, censorship of content and personal attacks.

I say Harrison should do what he feels is best to organize thread titles including changing the title name. This is Harrison's site and he has done an excellent job keeping it organized. Who cares what the title is as long as we can find what we are looking for and can share information.

Harrison should delete any posts that he feels are anger filled or vulgar or personal attacks against other posters. No one here should protest Harrison's decision to delete for these reasons. If they do protest, Harrison should delete their protests without notice or explanation. I think we all would rather not be exposed to anger and such even though chronic pain and meds can cause some of us to be angry. I think that angry posters will get the message after their posts are deleted and kindness will follow.

Harrison should not engage posters who protest; deleting their abusive posts should be adequate remedy. Harrison, I think your engagement of complaining posters just extends the arguing ad nauseum. Silence is golden. You don't need to give anyone a reason for your decision. This will reduce your stress level and provide more time for you to help patients.

Harrison should not censor anyone's posts or question the poster's reason for posting. Harrison should provide adequate disclaimers to safeguard against liability problems. Censoring the thoughts of posters is counter-productive to the reason we are all here. We need to hear the real-life stories and the results of poster's research, good or bad, to make decisions for ourselves that are life-affecting decisions. Censoring would make us seek info elsewhere.

Harrison should not ask anyone to leave adrsupport.org. Deleting offensive posts without notice or explanation should be an adequate remedy to deter abusers. Everyones' opinions are important no matter who they are. 'Culling' posters is the same as censorship and would make us leave the site and go elsewhere.

Well, what do you all think? Does this sound like a compromising compromise?

joey

[tmont]

Rich,

Thank you for your more 'open' response. I think we all understand--and accept-- that this is a tiring learning process for you as well and it's good to finally see some goodwill all around here. No need to tug on the heartstrings, I can relate: I spent 10 hours on the road Friday and am now cramming for my first nursing exam tomorrow. Bottom line: little sleep and NO family time. Hopefully will see them once before Christmas.

Firstly, to respond to your comment above: let me make it clear that I was not calling for reinforcement from 'lurkers' and there is no behind the scenes conspiracy (involving me in any case). I've always put my opinion out there openly. And anyway,the lurkers don't come out until one guy is on the ground and already half-dead so as to be sure to be upwind from the stench of decomposition. It's a bit early for that.

I agree with Joey's suggestion there, that Rich be able to--and should-- stop truly 'trolling' or hurtful posters who seem to only come out when they smell blood, in order to get a dig in themselves. Especially when they're quasi-invisible in other discussions However: we all have been, and are, guilty of knee-jerk reactions at times. Deciding when to bring the boom down and when to let it ride isn't easy. But it's something to be watched more closely. Next:

More specifically, I posed a question earlier which went unanswered: what is the amount of time I should spend on this issue or 2-3 new patients. It went unanswered, because it is a tough, seemingly rhetorical issue.

Rich, on the censuring of titles (in the absence of emoticons or some other system allowing people to use a 'mood flag'), I can't agree with this and I'm asking you to please reconsider. It really shouldn't take up much time, but if it does--well, the community's concerns count along with the 'new folks'. It's important to patients, thus to this community and it's obviously an issue that will close or widen the gap here. I know you can empathize with how patients are feeling--proof in related link--even if their expression is not always cool-headed. Pain makes us a bit touchy at times

http://adrsupport.org/eve/forums/a/t...1/m/1791047682

Ok, another suggestion: if Groupee doesn't support icons--are you sure, because we can use exclamation points, etc-- then how about a number or letter system before each post? Roughly Ex: 1--thrilled, 2--pretty happy, 3--mixed, 4--not great, 5--very disappointed OR:

-- divide your Surgical Outcomes file into TWO files: happies and unhappies, and let people post where they want. Newbies immediately see two categories and don't have to walk through a maze of identical doors and open each one to see what's behind it.

For the record: I still think the best thing for patients and surfers here is to let the patients use the titles they want. But if this is truly a no go, then let's find something that will work for everyone (and as you know, in this case it means no one is 100% happy so the operative word here is COMPROMISE,folks).

I gotta go study. Will have a hard time explaining that I bombed Ortho-Traumato-Rhumato because I was fooling around on the Internet

Trace

[Harrison]

Joey, I like your ideas, but I have a question. I maintain a policy in which I delete topics on very rare occasions. On one hand, you offer me complete latitude to edit/delete topics when they are inappropriate (see the Terms of Service, which you read again today), but then later, call this censoring.

People absolutely freak out when they think a post has been deleted -- even when it hasn't (see recent topic). As an editor in an active community, it's a never-ending challenge.

So far, only two people have been "censored" or banned: both are non-patients...both are brokers/sales agents in the spine industry. Perhaps it makes sense to consider membership in this community as a privilige exclusive to patients. I'll give this some thought.

[tmont]

People freak out just as much when their words are modified without just cause. It may specify in the 'Terms of Service' that the content of this website is the 'intellectual property of the owner' (I'll have to look into that by the way) however I also disagree with that. My words and thoughts first belong to me and I share them AS IS, as does every other poster who respects the rules of basic RESPECT. If that's not going to be entirely respected by Board Owners, Moderators, or Advisors, then it is pointless to post here.

I'm out for this evening.

Trace