authenticity?

[ess922]

hoping to spark an open, healthy and productive discussion:

personally speaking, i found this site at a time when my health was not the best and i was looking for support. i don't post often and i read less and less because, sadly, i have come to wonder how supportive an unsecured cf forum can really be?

as we read posts and blogs, we really have no idea who the author is! despite who they may claim to be. i had no concept that someone would ever pretend to be other than who they are online until i experienced internet scammers first-hand on another venue. now its sad to say, but those who are "less than authentic" seem to have found their way even to sites like this, which are supposed to be for real cf support.

i wish a site like this could be more sacred. more of a place that i knew would be safe. the site administrator has commented on this recently and said despite some requests to make this forum more secure, she wants it to remain completely open and allow for anonymity as need be. but all of the freedoms afforded here make sureity impossible.

sure, its a case of reader beware... but i think as a community, it might benefit us to require more personal accountability.

i'd love to see a system whereby some real-world verification of one's identity and purpose on the site was required for full access. or at the very least, some kind of designation next to the screennames of those who refuse to provide verifiable information (more than an email address, which anyone could create).

a signed letter from a cf provider verifying one's name, address, phone number and connection to cf, and an actual written terms of service agreement that one needed to SIGN and send to the moderator would be an excellent start. then, the moderator could indicate whether or not they have received that documentation next to each screenname. or simply indicate by a simple symbol which "members" have refused to provide this information. this hard-copy verification is done on other sites (not cf related) that want to make sure members feel totally secure, knowing with whom they are speaking.

would this be more work for the site adminsitrators, sure. but i'd hope, it would be worth it in the name of assuring genuine support for people who come here in search of it.

just wondering what people think of this idea? any other ideas for ways to make this a more secure place that might be less labor intensive? or do people feel its unnecessary. are people fine with the anonymity this site allows?

let's discuss...
-ellie (aka: a real person with cf. i've got the phlegm to prove it)

 

[ess922]

hoping to spark an open, healthy and productive discussion:

personally speaking, i found this site at a time when my health was not the best and i was looking for support. i don't post often and i read less and less because, sadly, i have come to wonder how supportive an unsecured cf forum can really be?

as we read posts and blogs, we really have no idea who the author is! despite who they may claim to be. i had no concept that someone would ever pretend to be other than who they are online until i experienced internet scammers first-hand on another venue. now its sad to say, but those who are "less than authentic" seem to have found their way even to sites like this, which are supposed to be for real cf support.

i wish a site like this could be more sacred. more of a place that i knew would be safe. the site administrator has commented on this recently and said despite some requests to make this forum more secure, she wants it to remain completely open and allow for anonymity as need be. but all of the freedoms afforded here make sureity impossible.

sure, its a case of reader beware... but i think as a community, it might benefit us to require more personal accountability.

i'd love to see a system whereby some real-world verification of one's identity and purpose on the site was required for full access. or at the very least, some kind of designation next to the screennames of those who refuse to provide verifiable information (more than an email address, which anyone could create).

a signed letter from a cf provider verifying one's name, address, phone number and connection to cf, and an actual written terms of service agreement that one needed to SIGN and send to the moderator would be an excellent start. then, the moderator could indicate whether or not they have received that documentation next to each screenname. or simply indicate by a simple symbol which "members" have refused to provide this information. this hard-copy verification is done on other sites (not cf related) that want to make sure members feel totally secure, knowing with whom they are speaking.

would this be more work for the site adminsitrators, sure. but i'd hope, it would be worth it in the name of assuring genuine support for people who come here in search of it.

just wondering what people think of this idea? any other ideas for ways to make this a more secure place that might be less labor intensive? or do people feel its unnecessary. are people fine with the anonymity this site allows?

let's discuss...
-ellie (aka: a real person with cf. i've got the phlegm to prove it)

 

[ess922]

hoping to spark an open, healthy and productive discussion:

personally speaking, i found this site at a time when my health was not the best and i was looking for support. i don't post often and i read less and less because, sadly, i have come to wonder how supportive an unsecured cf forum can really be?

as we read posts and blogs, we really have no idea who the author is! despite who they may claim to be. i had no concept that someone would ever pretend to be other than who they are online until i experienced internet scammers first-hand on another venue. now its sad to say, but those who are "less than authentic" seem to have found their way even to sites like this, which are supposed to be for real cf support.

i wish a site like this could be more sacred. more of a place that i knew would be safe. the site administrator has commented on this recently and said despite some requests to make this forum more secure, she wants it to remain completely open and allow for anonymity as need be. but all of the freedoms afforded here make sureity impossible.

sure, its a case of reader beware... but i think as a community, it might benefit us to require more personal accountability.

i'd love to see a system whereby some real-world verification of one's identity and purpose on the site was required for full access. or at the very least, some kind of designation next to the screennames of those who refuse to provide verifiable information (more than an email address, which anyone could create).

a signed letter from a cf provider verifying one's name, address, phone number and connection to cf, and an actual written terms of service agreement that one needed to SIGN and send to the moderator would be an excellent start. then, the moderator could indicate whether or not they have received that documentation next to each screenname. or simply indicate by a simple symbol which "members" have refused to provide this information. this hard-copy verification is done on other sites (not cf related) that want to make sure members feel totally secure, knowing with whom they are speaking.

would this be more work for the site adminsitrators, sure. but i'd hope, it would be worth it in the name of assuring genuine support for people who come here in search of it.

just wondering what people think of this idea? any other ideas for ways to make this a more secure place that might be less labor intensive? or do people feel its unnecessary. are people fine with the anonymity this site allows?

let's discuss...
-ellie (aka: a real person with cf. i've got the phlegm to prove it)

 

[IG]

I hate to say it but I don't agree.
I mean you bring up good points, can I believe that so and so hit his head on the brick wall like they said? Did they actually get sucked into the Bermuda triangle? But this is the internet, as much as you want to be secure, there will always be those instances where you can just never tell both in real life and the internet.

For example if you go into a CF clinic and you meet a mother with a son who looks malnourished might have CF etc, she goes ahead and makes a big fuss about how her son is sick, how he has CF, and then when you go into see the doctor you find out the mother is just a raving lunatic and the son has another disease and has nothing to do with CF at all. Would you have, at the time while talking to her, go "I don't believe you give me a letter stating that he's sick!" Most likely not because you're in a situation where you've been lead to believe that the son is sick, but what can you do about it?

I guess what I'm getting at here is that in real life, as well as online, there will be instances where people are lying and will continue to lie. Yes the internet offers opportunities for greater anonymity but anything over the internet should be taken with a seed of doubt anyway. (Except Nigerian emails, nobody is giving you a million dollars if you just give them your checking account, that should be somewhat obvious). I mean if a verification of some sort went into effect what's to say that it works anyway? Joanne or Bill most likely don't have the time nor the resources to call every CF clinic and verify a patient (which I'm sure is against some HIPPA law unless done properly), verify that that doctor exists, etc.

And something to think about:
Even if people were verified to have CF and were allowed to join this forum who's to say that they wouldn't then lie about something else? Wouldn't you, despite all the steps taken to verify that person, still feel betrayed and vulnerable because that confidence that you have built up under the pretense that they're 'valid' has been abolished and ripped to shreds?

Things are easy to forge nowadays. I could share a story of being a double lung transplant recipient and type up a letter, copy the dallas-st. paul letter head and forge my old doctors signature (not that I would, or could, looks like chicken scratch to me) and have it looks completely authentic because I did my work.

I apologize if some people take offense to this post, I'm just typing as I think of it. I just bring all of this stuff up in the spirit of discussion and debate.

 

[IG]

I hate to say it but I don't agree.
I mean you bring up good points, can I believe that so and so hit his head on the brick wall like they said? Did they actually get sucked into the Bermuda triangle? But this is the internet, as much as you want to be secure, there will always be those instances where you can just never tell both in real life and the internet.

For example if you go into a CF clinic and you meet a mother with a son who looks malnourished might have CF etc, she goes ahead and makes a big fuss about how her son is sick, how he has CF, and then when you go into see the doctor you find out the mother is just a raving lunatic and the son has another disease and has nothing to do with CF at all. Would you have, at the time while talking to her, go "I don't believe you give me a letter stating that he's sick!" Most likely not because you're in a situation where you've been lead to believe that the son is sick, but what can you do about it?

I guess what I'm getting at here is that in real life, as well as online, there will be instances where people are lying and will continue to lie. Yes the internet offers opportunities for greater anonymity but anything over the internet should be taken with a seed of doubt anyway. (Except Nigerian emails, nobody is giving you a million dollars if you just give them your checking account, that should be somewhat obvious). I mean if a verification of some sort went into effect what's to say that it works anyway? Joanne or Bill most likely don't have the time nor the resources to call every CF clinic and verify a patient (which I'm sure is against some HIPPA law unless done properly), verify that that doctor exists, etc.

And something to think about:
Even if people were verified to have CF and were allowed to join this forum who's to say that they wouldn't then lie about something else? Wouldn't you, despite all the steps taken to verify that person, still feel betrayed and vulnerable because that confidence that you have built up under the pretense that they're 'valid' has been abolished and ripped to shreds?

Things are easy to forge nowadays. I could share a story of being a double lung transplant recipient and type up a letter, copy the dallas-st. paul letter head and forge my old doctors signature (not that I would, or could, looks like chicken scratch to me) and have it looks completely authentic because I did my work.

I apologize if some people take offense to this post, I'm just typing as I think of it. I just bring all of this stuff up in the spirit of discussion and debate.

 

[IG]

I hate to say it but I don't agree.
I mean you bring up good points, can I believe that so and so hit his head on the brick wall like they said? Did they actually get sucked into the Bermuda triangle? But this is the internet, as much as you want to be secure, there will always be those instances where you can just never tell both in real life and the internet.

For example if you go into a CF clinic and you meet a mother with a son who looks malnourished might have CF etc, she goes ahead and makes a big fuss about how her son is sick, how he has CF, and then when you go into see the doctor you find out the mother is just a raving lunatic and the son has another disease and has nothing to do with CF at all. Would you have, at the time while talking to her, go "I don't believe you give me a letter stating that he's sick!" Most likely not because you're in a situation where you've been lead to believe that the son is sick, but what can you do about it?

I guess what I'm getting at here is that in real life, as well as online, there will be instances where people are lying and will continue to lie. Yes the internet offers opportunities for greater anonymity but anything over the internet should be taken with a seed of doubt anyway. (Except Nigerian emails, nobody is giving you a million dollars if you just give them your checking account, that should be somewhat obvious). I mean if a verification of some sort went into effect what's to say that it works anyway? Joanne or Bill most likely don't have the time nor the resources to call every CF clinic and verify a patient (which I'm sure is against some HIPPA law unless done properly), verify that that doctor exists, etc.

And something to think about:
Even if people were verified to have CF and were allowed to join this forum who's to say that they wouldn't then lie about something else? Wouldn't you, despite all the steps taken to verify that person, still feel betrayed and vulnerable because that confidence that you have built up under the pretense that they're 'valid' has been abolished and ripped to shreds?

Things are easy to forge nowadays. I could share a story of being a double lung transplant recipient and type up a letter, copy the dallas-st. paul letter head and forge my old doctors signature (not that I would, or could, looks like chicken scratch to me) and have it looks completely authentic because I did my work.

I apologize if some people take offense to this post, I'm just typing as I think of it. I just bring all of this stuff up in the spirit of discussion and debate.

 

[CowTown]

I see your point, but I don't personally see this site needing to be such an exclusive club. I think you just need to take the good posts with the bad posts, take what you need and leave the rest - as many others have said in the past. Plus how Candice expressed, you'll always run across people, real and online, who you need to not trust and beware of, just human nature.

The only suggestion I do have is for you to experiement with the Private Topics. You can invite only those members you feel comfortable with in on it. Discuss and support within a protected envrionment. I think that's what that feature was created for. Just a thought.

 

[CowTown]

I see your point, but I don't personally see this site needing to be such an exclusive club. I think you just need to take the good posts with the bad posts, take what you need and leave the rest - as many others have said in the past. Plus how Candice expressed, you'll always run across people, real and online, who you need to not trust and beware of, just human nature.

The only suggestion I do have is for you to experiement with the Private Topics. You can invite only those members you feel comfortable with in on it. Discuss and support within a protected envrionment. I think that's what that feature was created for. Just a thought.

 

[CowTown]

I see your point, but I don't personally see this site needing to be such an exclusive club. I think you just need to take the good posts with the bad posts, take what you need and leave the rest - as many others have said in the past. Plus how Candice expressed, you'll always run across people, real and online, who you need to not trust and beware of, just human nature.

The only suggestion I do have is for you to experiement with the Private Topics. You can invite only those members you feel comfortable with in on it. Discuss and support within a protected envrionment. I think that's what that feature was created for. Just a thought.

 

[miesl]

HIPPA violations, extra work, and a desire to not have my actual name, location, and other vital statistics posted for all the world to see...

This is the real world. It's harsh. There will always be liars and manipulators. Online is not special in that respect. I have met people IRL who have been the scum of the earth, and I've had that same pleasure online. I've also met some pretty darn awesome people online, and I'd know - I married one of them.

If you aren't big enough to deal with it, well... that's just the way it is in the grownup world.

 

[miesl]

HIPPA violations, extra work, and a desire to not have my actual name, location, and other vital statistics posted for all the world to see...

This is the real world. It's harsh. There will always be liars and manipulators. Online is not special in that respect. I have met people IRL who have been the scum of the earth, and I've had that same pleasure online. I've also met some pretty darn awesome people online, and I'd know - I married one of them.

If you aren't big enough to deal with it, well... that's just the way it is in the grownup world.

 

[miesl]

HIPPA violations, extra work, and a desire to not have my actual name, location, and other vital statistics posted for all the world to see...

This is the real world. It's harsh. There will always be liars and manipulators. Online is not special in that respect. I have met people IRL who have been the scum of the earth, and I've had that same pleasure online. I've also met some pretty darn awesome people online, and I'd know - I married one of them.

If you aren't big enough to deal with it, well... that's just the way it is in the grownup world.

 

[Scarlett81]

Hi ellie,
I think you bring up excellent points that I have also wondered about from time to time. Personally, in general I am very cautious about the internet. I really don't have any relationships with anyone here outside of pming and threads. I've seen too often people have bad experiences with the internet and privacy/security type things like what you are saying. If things were different, maybe I would be more prone to get closer to people but I probably doubt it. I like this to remain separate from my 'real' world if you will. Also, just personally, I don't want cf to take up too big a part of my life than it already does daily.
So, I think what you are saying is good, but not practical and no one could ever enforce it. Thats the downside of the internet in general-you don't know who you are talking to.
As far as getting an acknowledgement from the doctor-I doubt some docs would comply. Some don't want to get involved b/c they worry than their patients attitudes and compliance would reflect them as a doctor. I doubt Dr. Walker would sign that for everyone, she doesn't seem like the type.
Anyway, I hear you loud and clear regarding your concerns. But thats why I keep a friendly distance and take what some say with a big grain of salt.

 

[Scarlett81]

Hi ellie,
I think you bring up excellent points that I have also wondered about from time to time. Personally, in general I am very cautious about the internet. I really don't have any relationships with anyone here outside of pming and threads. I've seen too often people have bad experiences with the internet and privacy/security type things like what you are saying. If things were different, maybe I would be more prone to get closer to people but I probably doubt it. I like this to remain separate from my 'real' world if you will. Also, just personally, I don't want cf to take up too big a part of my life than it already does daily.
So, I think what you are saying is good, but not practical and no one could ever enforce it. Thats the downside of the internet in general-you don't know who you are talking to.
As far as getting an acknowledgement from the doctor-I doubt some docs would comply. Some don't want to get involved b/c they worry than their patients attitudes and compliance would reflect them as a doctor. I doubt Dr. Walker would sign that for everyone, she doesn't seem like the type.
Anyway, I hear you loud and clear regarding your concerns. But thats why I keep a friendly distance and take what some say with a big grain of salt.

 

[Scarlett81]

Hi ellie,
I think you bring up excellent points that I have also wondered about from time to time. Personally, in general I am very cautious about the internet. I really don't have any relationships with anyone here outside of pming and threads. I've seen too often people have bad experiences with the internet and privacy/security type things like what you are saying. If things were different, maybe I would be more prone to get closer to people but I probably doubt it. I like this to remain separate from my 'real' world if you will. Also, just personally, I don't want cf to take up too big a part of my life than it already does daily.
So, I think what you are saying is good, but not practical and no one could ever enforce it. Thats the downside of the internet in general-you don't know who you are talking to.
As far as getting an acknowledgement from the doctor-I doubt some docs would comply. Some don't want to get involved b/c they worry than their patients attitudes and compliance would reflect them as a doctor. I doubt Dr. Walker would sign that for everyone, she doesn't seem like the type.
Anyway, I hear you loud and clear regarding your concerns. But thats why I keep a friendly distance and take what some say with a big grain of salt.

 

[ess922]

don't want to interject too much as i think the discussion so far is a good one. but just to clarify a couple of things:

i was not at all suggesting that vital information be posted publicly. just that the administrators have it in a confidential file (hard copy). and they can simply indicate whether they have the information. not share it. this is done on other (non-cf) sites. those moderators feel it is well worth their time and extra effort. its not about being 'big' or grown up enough to take it, so to speak. its about providing some measure of internet security for everyone -- big or small. just cause i'm a grown up doesn't mean i like to be lied to. do you?

it would not be a hippa violation for a dr. to confirm a patient's status as a patient so long as the patient him/herself allowed it in writing! this is done all the time... for things like cf scholarships, where a doc must sign off on the patient being a cf patient in order for the patient to be a scholarship candidate.

of course, anyone could still lie about anything. but at least you'd have more of an idea of the source of the comments. then you can decide from a more informed perspective what to believe and what not to.

and christian, i'd never speak for our doc but she and i have discussed this a lot. i'm not sure what her particular stance would be about signing such a document for her patients on an individual basis. But requiring verification along the lines of what i'm mentioning was actually her idea.

thanks for a great discussion so far! keep it coming...

 

[ess922]

don't want to interject too much as i think the discussion so far is a good one. but just to clarify a couple of things:

i was not at all suggesting that vital information be posted publicly. just that the administrators have it in a confidential file (hard copy). and they can simply indicate whether they have the information. not share it. this is done on other (non-cf) sites. those moderators feel it is well worth their time and extra effort. its not about being 'big' or grown up enough to take it, so to speak. its about providing some measure of internet security for everyone -- big or small. just cause i'm a grown up doesn't mean i like to be lied to. do you?

it would not be a hippa violation for a dr. to confirm a patient's status as a patient so long as the patient him/herself allowed it in writing! this is done all the time... for things like cf scholarships, where a doc must sign off on the patient being a cf patient in order for the patient to be a scholarship candidate.

of course, anyone could still lie about anything. but at least you'd have more of an idea of the source of the comments. then you can decide from a more informed perspective what to believe and what not to.

and christian, i'd never speak for our doc but she and i have discussed this a lot. i'm not sure what her particular stance would be about signing such a document for her patients on an individual basis. But requiring verification along the lines of what i'm mentioning was actually her idea.

thanks for a great discussion so far! keep it coming...

 

[ess922]

don't want to interject too much as i think the discussion so far is a good one. but just to clarify a couple of things:

i was not at all suggesting that vital information be posted publicly. just that the administrators have it in a confidential file (hard copy). and they can simply indicate whether they have the information. not share it. this is done on other (non-cf) sites. those moderators feel it is well worth their time and extra effort. its not about being 'big' or grown up enough to take it, so to speak. its about providing some measure of internet security for everyone -- big or small. just cause i'm a grown up doesn't mean i like to be lied to. do you?

it would not be a hippa violation for a dr. to confirm a patient's status as a patient so long as the patient him/herself allowed it in writing! this is done all the time... for things like cf scholarships, where a doc must sign off on the patient being a cf patient in order for the patient to be a scholarship candidate.

of course, anyone could still lie about anything. but at least you'd have more of an idea of the source of the comments. then you can decide from a more informed perspective what to believe and what not to.

and christian, i'd never speak for our doc but she and i have discussed this a lot. i'm not sure what her particular stance would be about signing such a document for her patients on an individual basis. But requiring verification along the lines of what i'm mentioning was actually her idea.

thanks for a great discussion so far! keep it coming...

 

[Emily65Roses]

I don't agree at all. This isn't a communist government, thank you very much. And what about CF friends and spouses? They couldn't get a letter saying they had anything, but they have every right to be here. Period. End of story.

 

[Emily65Roses]

I don't agree at all. This isn't a communist government, thank you very much. And what about CF friends and spouses? They couldn't get a letter saying they had anything, but they have every right to be here. Period. End of story.