Self Protection Online

Hello everyone, would appreciate some feedback.  

A member has contacted me about Pacemaker Club rules for posting and commenting.  You can read our Pacemaker Club rules by going to Club and then to Terms of Use.  Please see in particular the Club’s comments under Disclaimer

Disclaimers are statements of information that help limit our legal liability for things such as errors and omissions, giving guidance and sharing personal opinions. 

A disclaimer might be used for example to let members know that any information provided here isn't a replacement for a trip to the doctor or to rely on the provided information to make important health care decisions.  Similarly,  “always check with your prescriber” is a good disclaimer to use when giving out any advice on a member’s medication.  This will protect ourselves and any vulnerable members from harm.

Anyway, back to the member.  She wrote to me saying that she has decided to place a personal disclaimer on her Bio that would explain her 'non medical' status and stating that any suggestions she makes should be verified with a doctor.  The member is clearly looking for ways of providing better protection online for herself and for any vulnerable members.  In her disclaimer she has written:-

When posting on this forum, please be aware that I am not medically trained.  Therefore any opinions expressed on this forum are based on personal experience only.  Any suggestions or opinions provided should be checked with a medical professional before taking any action or decision that may affect your health.

So my question to you all is, do you think a personalised disclaimer added to your Bio would be helpful?   If so, would you care to share with us what you might like to write in such a disclaimer, taking into account the different laws, the different healthcare systems that are in place wherever you live?   

Thank you for your help, as always


14 Comments

not medically trained

by new to pace.... - 2023-02-13 08:09:23

I think that the above wording should be included(or something similar) when we post each time that we mention something medical.  rather than keep going back and looking at our profile.  That puts the disclaimer with our written words.   Then we should mention in our answer to others "that they should always check with their doctors" as they unfortunaly have the last say.  

that  is unless we do not listen to them.

new to pace

it's already implied

by Tracey_E - 2023-02-13 08:21:43

The site makes clear that we are not medical professionals and any advice here is patient to patient. 

New to Pace/Tracey_E

by Gemita - 2023-02-13 10:15:48

Thank you both. Tracey, I agree with your comment “it’s already implied” although it seems to me that the Terms of Use are written for the protection of the Club, not for the protection of the individual member posting/commenting.  Therefore the member in question might feel more reassured posting her own disclaimer say with each post/comment she makes as New to Pace suggests, or by placing a disclaimer in her Bio. 

Text on a profile unlikely to be a defence

by LondonAndy - 2023-02-13 15:07:50

I am a Data Protection Officer in the UK, and the Information Commissioner here says words to the effect that we cannot "bury away" important matters in a privacy policy; instead, key information must be presented at the time people enter their personal details, for example. Whilst not quite the same situation as a disclaimer, I think if ever something went to court it would be treated in a similar way. Also, it would be rather tedious to have to manually add a disclaimer on every message, as well as add significantly to the amount of data stored.

How about under "About Us", which appears at the foot of every screen, text is added along the lines of:

"Comments posted here are from the experience of other recipients, with the intention of helping others with ideas about someone's own situation, and are not a substitute for professional medical advice or treatment".

I am sure others would be able to suggest better text.

Excellent suggestion

by Gemita - 2023-02-13 15:46:37

Andy, where did you come from?  What a great suggestion, except I am not in control of what appears at the foot of our home page, but to get your input as a Data Protection Officer has been so valuable.  

Yes it would be tiresome to keep typing our disclaimer on each posting we make and your idea would be a much better one if we can get a short text approved and placed under About Us where it can be readily seen. 

Iā€™m with Andy

by Lavender - 2023-02-13 15:51:56

When I first posted here, often I said that I had no medical background or something to that effect.  I have developed more of a habit of telling people to ask their pharmacist or doctor. I can only share what I know from personal experience.  I'm going to also post it in my profile. šŸ‘šŸ¼

Disclaimer

by AgentX86 - 2023-02-13 16:04:58

I don't think anything will stop frivolous suits but any disclaimer is better than none.  I know we don't have a lot of control over the site but a disclaimer on the login page stating that something like "by loggin in, I understand...", then on the welcome page say it again, maybe in red blinkin letters (please no!).

Terms of Use

by Penguin - 2023-02-13 18:21:58

These personal disclaimers are all over Twitter. Yes they're displayed prominently as pinned tweets as Andy describes. Mainly I've seen them used by medical professionals distancing their Twitter opinions from their medical roles.  

I agree about a permanent pinned comment for all to see and something written into the terms of use for members using the forum for advice. 

Posting for Millie3+9

by Gemita - 2023-02-13 19:52:26

Hello everyone,

in regards to privacy I totally agree with LondonAndy! 

We are not MEDICALLY TRAINED is also essential addition. I wonder if this could somehow be added (attention IT people} on top or bottom of every posting......automatically?  

Such a sad šŸ˜” world we live in!!!   Stay well and be kind to yourself 

What about when people join?

by PacedNRunning - 2023-02-13 22:57:15

What about when people join? I moderate a few groups and they have to acknowledge that information is not a replacement for medical advice and it is others experiences/journies. Something to that effect. The interesting thing is so many find answers from talking to others. I can't even say how many people have been able to help their medical team with complex cases. I usually follow up with talk to your medical team etc with most posts. I'm in the medical field and so many assume we know everything when we don't. We only know our specialty. It's like a mechanic. He may know how to work on cars and the basics but changing the engine on a Mercedes vs FORD can be different. Car mechanics can specialize in certain brands on and only know that brand. Probably not a good comparison but I think the point is made. Everything I learned about pacemakers was on my own reading and buying textbooks, talking to others and learning. I've asked my PM rep a lot! Especially when I read conflicting information from people. I fortunately can understand the basics so it's easier to digest for me. I hope everyone that comes here knows nothing here is medical advice. I feel like that is common sense but I know that's not always the case. 

Thank you all

by Gemita - 2023-02-14 02:04:12

Lavender, AgentX86, Penguin, Millie, PacedNRunning, thank you all for your contributions. 

So many members, new and established come here looking for a diagnosis when they fail to get one from their own medical team.  They often look for a diagnosis on that vibratory feeling they may have in their diaphragm, or on that sharp pain around their device months or longer after pacemaker implant, or on their concerns about their arrhythmias, and so on and it is all too easy for everyone to get involved and to try to guess what is going on.  I am certainly guilty of this, so I can see why some of us feel we can get into trouble with giving medical advice.  I guess it is the way we answer a post that is important, what we can and can not, or should not say and this was the original member’s concern here that triggered this post.

The problem is though how can we really stop this from happening when most of our members ask us questions they should be asking their doctors?  If we as a support group kept referring our members back to their doctors for advice, what sort of a support group would we really be?   We have to try to answer these sorts of questions to satisfy the member seeking help.  And I am afraid, however much we keep telling the member this is an information group and to go back to their doctors for a diagnosis, they still come on here looking for one?  So what is the solution?

I don’t think having stringent rules on what we can and cannot say would work well for most of us and we would probably not even attempt to respond to the majority of posts that appeared here if that were to be the case.  In any event, it would deprive new and established members of helpful feedback on a “potential” cause for their symptoms which would then help them to ask their medical team further questions.  So I don’t think further “Rules” would necessarily help anyone, although gentle reminders of the “support role only” that we all play in being members might just help to modify "how we respond" in the future.  As LondonAndy suggests, I think that a short text reminder displayed on the home page for all to see, at all times, would be an excellent idea.  The current statement:

Pacemaker Club is an online community for pacemaker, implantable cardioverter defibrilllator (ICD) and cardiac resynchronization therapy (CRT) recipients could perhaps be revised to something like:

Update:

Pacemaker Club is an online community for Cardiovascular implantable electronic device (CIED) recipients. Our purpose is to help CIED recipients meet, share information and support each other.   Any information shared should not be a substitute for seeking professional medical advice.

I will have a think about how to move forward on this but I am not too hopeful I can change anything that is currently fixed/displayed on the Home Page.  In the meantime those who wish, can place their personal disclaimers on their profiles

PacedNRunning

by Gemita - 2023-02-14 13:00:50

PacedNRunning, sorry I missed your question "what about when people join the Pacemaker Club you ask"?  I see on your forums that new members have to acknowledge that information is not a replacement for medical advice, rather it is others' experiences/journeys, or something to that effect.  I have just had a look and I cannot see anything like that for a new member to acknowledge when joining the Pacemaker Club, although "The Terms of Use" does of course confirm this.

Sounds great.

by PacedNRunning - 2023-02-17 00:38:24

I wish it was just common knowledge that no one seeks medical advice from anyone other than their own doctor but unfortunately, not everyone thinks this way. I have done some research on this but kept running into "anyone who takes medical advice from people not part of their medical are .... fill in the blank. Basically, not smart. Makes you not want to help people but the medical community almost makes us rely on others experiences because they don't have the time to put into figuring it all out.   These types of forums have helped so many, including myself so it's hard to just not want to share experiences with others. I like the disclaimer above that you wrote.

PacedNRunning

by Gemita - 2023-02-17 03:23:33

I agree, our doctors are always pushed for time during appointments and even after waiting months, or longer in some cases here in the UK for a follow up, our appointments may be rushed when we eventually get in to see our doctors, leading to further frustration, doubt and a feeling that nothing will ever be done to address our concerns.  No wonder forums like this exist PacedNRunning and no wonder some of us get into trouble seeking and receiving a diagnosis from a well meaning member or may end up in a legal battle for trying to share helpful information.  

This is such an important subject  and I don’t think I have even begun to address it here. 

My updated Disclaimer as an idea for the Club’s home page is already mainly in existence elsewhere but hidden from view unless we search under Club for it, so I have not stated anything new, just wanting to place it in a permanent, viewable position which is where it really needs to be.

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