Confidentiality Advice Please

[Mumble]

I have just found, in trawling the net, a forum my disability support officer posts to where she has copied and pasted an email I sent her. Although it doesn't have my name it contains confidential information about me, it has the name of my university, my disability and enough info for anyone who wanted to find out to know it's me. I am absolutely furious. I assume this must contravene some law somewhere, but what? I need to get my facts absolutely straight before I take this higher. And I don't know what to do now - never email her?

[Flora]

 

Mumble I'm absolutely gob smacked. I'm sorry I don't know a much about the law regarding these things, but surely there is some confidentiality agreement she must sign when she took the job which this sort of thing would come under.

 

I hope someone will come along who knows their stuff regarding this. But you must be absolutely livid.

 

It's bad enough that she hasn't been able to help you and support you, then this on top of all of that.

 

You must feel sick. I'd be devestated if this happened to me. Even if nobody else has the inclinication, ability or wherewithall to work out who the email refers to, it must feel very exposing the fact that YOU know it's YOU. I hope you can find some way of getting this sorted.

 

Flora XX

[llisa32]

Hi Mumble,

 

This absolutely must break the rules of confidentiality - particularly within the confines of her role - I can't believe she has been so stupid and thoughtless - actually....scrap that...yes I can believe it!

 

Totally wrong - and for me it proves even more that she is well out of her depth within her role - what did she post the mail for? - was she asking for advice on how to support you?

 

This really should get taken to her superiors, and please please let either a rhino or a friendly witch speak to someone on yr behalf <'>

[puffin]

I am very shocked - this sounds like an extreme breach of confidentiality. As previous posters have said it seems to have exposed her lack of competence in giving you the support you need.

 

You should definitely complain

- print a copy of her posting at once so that you have a record (in case she tries to remove it)

- try and see her superior - take somone with you who can help you explain the situation

- if you have to go on your own make some notes both about this breach of confidentiality but also about the lack of support and how she has made you feel bad about needing support.

- when you get to meet with her superiors you should demand to have her removed as your disability support officer at once as I cannot see how you could trust her again if she does not respect you right to confidentiality.

[Kinda]

Hi mumble

 

How certain are you that someone could link the information to you? I think this is an important aspect if you want to pursue some action with her. While its obvious to you because its your email how obvious would it be to some outsider who doesn't know you?

 

If it can be linked to you then its totally wrong and you should pursue it.

[noogsy]

hi sweetie im inclined to say that this needs direct action.

you need to print out your email hopefully you still have it.

print out the post on the forum.

keep a copy for your self .

then grab the guilty person warmly by the lapels,

make sure they know you are going to take it further.

or you can go above the guilty person.....

im appalled ...im sure this persons boss will be to...love noogsy

[justamum]

I don't know the legal side, but this must contravene the Data Protection Act, but at the very least this is UNPROFESSIONAL CONDUCT!

[fiorelli]

Hi Mumble, sorry this has happened to you.

 

I would echo what the others have said, but I would take screen prints as well as print out the actually post. That way, everyone can see fully what was said where and when etc.

[Guest Lya of the Nox]

<'>

omg

screen print

is there anyone you can send the page to also so they can screen print it too?

i think it may be hard for peeps to add it up to you, but she still should not have done this at all

x

[Kinda]

Hi Mumble

 

She should not have printed any of your email without your permission but if from the email they can link it to you and then this is very serious. I think also the important issue is its content, if this is of a very personal nature then there is no excuse at all.

 

Take care.

[puffin]

The fact that she cut and pasted any of your e-mail at all is a pretty serious breach of confidence IMHO.

 

What was the purpose of her posting your e-mail? Was she seeking advice herself or information? I ask as many Universities have extensive online disability information resources so I can't really see why she felt it necessary to paste in individual correspondence.

 

If she was looking for advice etc then she could have posted some very general details without reproducing your e-mail at all - for example I can't think why it was necessary to identify which University you attend as it is not really an important factor. Also a professional disability advisor should have access to advice that does not require publishing her client's correspondence online.

[Corcaigh]

Hi Mumble

I deal with ethics and confidentiality everyday - I am an university researcher and I do research mainly using Computer-Mediated Communication, therefore I think I can help you here.

 

The fact that she used your private correspondence on a public forum without your consent is quite serious. The Internet is still a jungle as far as confidentiality and ethics are concerned - for instance everything published on the Web is considered of public dominion and it's not clear whether permission to use the material must be asked- but, in the case of private email, THERE IS NO DOUBT. An email is like a private letter (on paper) and you are liable of legal intervention if you publish a private letter on a newspaper (or a forum, the cyber-equivalent) without explicit consent.

 

I'll give you an example of what I do and what I have to do to work with participants' data. Every single piece of material I use for textual analysis, whether an email, a chat, a forum post, a blog, etc., must have explicit consent from the author in order to be used by me. Even then, I change completely names and personal details to avoid identification. And even then, I DO NOT use the material in public, only with supervisors (internal college staff). If any excerpt has to be used say, on a paper or publication, it will be completely "camouflaged" to avoid identification.

 

If I don't do this, the University will throw me out for infringement of ethical codes.

Literally.

 

If you want some references to support your accusation against this person (I really believe you should take action), write me privately, I will be happy to send you some stuff.

 

Martina

[Kathryn]

Mumble,

 

What the others said.

 

There can be no question that this is wrong. Definitely take it further, through whatever complaints procedure exists.

 

K x

[pearl]

Just adding my support to the others Mumble.

I cannot believe she has done this to you. <'>

[Bagpuss]

That is utterly disgraceful!

[dooday24]

i think this is discraeful mumble i would definetly take it further

goodluck

love donnaxxx

[Mumble]

Thank you. I am getting together the evidence I need. I am seeing my supervisor (an OGB in my opinion) formally tomorrow and will bring it up with him - I saw him briefly today and have been in several hours of sessions with him so he knows I'm in a bit of a state with struggling being an understatement. My aim is to make clear what has happened, how it makes me feel, and that I need help to take it further and need to know who to take it to. I will take it along in writing for him to read in case I find it difficult to speak. Taking to my disability support officers Superior is unlikely to be a possibility as the two of them are what I can only describe as 'pally' and as her superior also contributes to the same forum that the disability support has copied my email to, she will have seen this and has decided to take no action. I am worried about talking to my supervisor in that his role is academic support but has become very fuzzied recently with mentoring support and I'm not sure where the boundaries are. I may write a letter, including copies of supporting evidence, and simply show it to him and ask whom I should send it to.

 

To give some background to the pasted email - this is from last August. It was at a time when I still hoped that she did know what she was doing. I had read (probably Olga's book) on visual stimulus problems in autism, had read about Ian but didn't know much about him and whether he was an OGB or not. I sought her advice on whether I should take this further and whether this should be with Ian or her recommended 'dyslexia overlay specialists' (which I know know from things Ian has written and from seeing him is defiantly not what I needed - I am not dyslexic btw). Given that I have signed confidentiality agreements (I wondering now if she has - seems the wrong way around) I have always assumed that all internal college emails are confidential to the sender and recipient. Indeed the nature of the research I am doing on my PhD requires very careful adherence to confidentiality, data protection and ethics. Within this email, I asked her advice, included cases I have known about with children (this is the part that actually alarms me most, as I presented these in a confidential email and they are now on the web for all) and some of my background. She has posted to the forum with a blurb of her own and then my email. Between the two it gives:

• my university
• my department
• that I am a postgraduate student
• specifics on my previous occupation
• my diagnosis
• specific difficulties I have
• the possible wearing of tinted lenses

I should note that my department is fairly small and specific. I am the only post grad research student (at least according to official uni stats, which I don't believe) with AS. I am the only student in the department to wear tinted lenses. I am one of very few who worked in my specific sector previously. It would be very easy for anyone reading this who knew a few pieces of the information (i.e. previous occupation and current placement) to fill in the remaining details re. my disability status.

 

Whilst this is last year, and the fallout, if there is any, should have happened by now, there are principles here as much as specifics. I have to address this, because, although she pretty much broke down any remains of a student/support relationship yesterday (see other thread) this has ongoing implications for how she uses any information in future and I feel strongly that she needs to be held accountable for her actions.

 

I will try and address some of your points - but thank you everyone.

 

You must feel sick. I'd be devestated if this happened to me. Even if nobody else has the inclinication, ability or wherewithall to work out who the email refers to, it must feel very exposing the fact that YOU know it's YOU. I hope you can find some way of getting this sorted.

Yes, sick is exactly how I feel. Whether this has consequences or not is almost unimportant. It is the effect it has had on me and the fear it has left me with.

 

How certain are you that someone could link the information to you? I think this is an important aspect if you want to pursue some action with her. While its obvious to you because its your email how obvious would it be to some outsider who doesn't know you?

As I've said in response to Flora, whether people actually link or not (and yes, I believe it can be to those who know me/have some background on me - including my past employer which has implications if I were to go back to that line of work and choose not to disclose my dx) is almost irrelevant - her actions I think are the concern here.

 

If she was looking for advice etc then she could have posted some very general details without reproducing your e-mail at all - for example I can't think why it was necessary to identify which University you attend as it is not really an important factor. Also a professional disability advisor should have access to advice that does not require publishing her client's correspondence online.

And I think I will take this line in my letter. She was seeking advice because it is very clear that she knows nothing about visual stimulus problems (well really she seems to know very little about ASDs), but she could easily have done so without pasting her email. Her blurb was more than enough.

 

- as an aside, from a whole forum of disability support officers across all universities, she got one (poor) reply. It seems very clear that unis aren't geared up for ASD students and that they have no understanding of the sort of work and the effects of the work, that Ian does -

 

I deal with ethics and confidentiality everyday - I am an university researcher and I do research mainly using Computer-Mediated Communication, therefore I think I can help you here.

 

The fact that she used your private correspondence on a public forum without your consent is quite serious. The Internet is still a jungle as far as confidentiality and ethics are concerned - for instance everything published on the Web is considered of public dominion and it's not clear whether permission to use the material must be asked- but, in the case of private email, THERE IS NO DOUBT. An email is like a private letter (on paper) and you are liable of legal intervention if you publish a private letter on a newspaper (or a forum, the cyber-equivalent) without explicit consent.

 

If I don't do this, the University will throw me out for infringement of ethical codes.

Literally.

Thanks, and I think this is another reason I am so taken aback by this. I go to great pains to make anonymous the text relating to my study participants. The ONLY people who know the institutions I am talking about are my PhD supervisors. Even they do not know the individual children in my study. As you say, email is private, and if she wanted to use my email, she must have sought my permission first. This is even more important as it contains personal details. But, there was no rationale for her using my email.

 

I'm going to have a go at writing the letter. I may be seeking your advice later.

 

Thanks again everyone - I appreciate your support.

[hev]

mumble i too would feel sick,very sick n fact,i think her behaviour is disgusting <'>

[Mumble]

I've written the letter and attached all supporting evidence (I had my original email). I'm going to run it past my supervisor tomorrow, but any ideas anyone who this should go to? At the moment I've addressed it "To whom it may concern", but I don't know who it does concern.

[Flora]

Mumble

 

Not entirely sure who you could send it to, but perhaps the university website has a complaints page? Or in the uni handbook there may be a section on making complaints? Also, everyone has a line manager.. so who is 'her' line manager? Could you start there and work your way up?

 

I may be wrong here, but I'm sure there's a bit in the human rights act referring to a right to privacy and privacy rights etc... all tied in with the data protection act.... I'm sure emails of that nature should come under the data protection act or something like that. (sorry this is all a bit sketchy in my head!!!)

 

Hope you can find who to send it to and that they do something about it. Don't stop until you get the response you want... ie someone who agrees that this is a dreadful breach of trust and possibly confidentiality.

 

Flora X

[pearl]

I think your OGB supervisor is the best person to go to initially Mumble, in fact I'd thought of him before you decided. Your post above is superbly argued, if your letter is like that I don't think they'll have a leg to stand on. (a justifiable or logical basis for defence)

[noogsy]

well me and hubby are sitting over our breakfast discussing you mumble dear.and im inclined to think that the uni people may close ranks if you take this info to them.why not ask for help at the citizens advice bureau?maybe they can point you in the right direction..or possibley the students union?erm im giving you suggestions.if you go to the police they will probably tell you to get legal advice.you do need to get someone to log your complaint.good luck dear...love noogsyxxxxx

[puffin]

Many Universities have a complaints procedure if people beleve that they have been unfairly treated or discriminated against - perhaps you sould look into whether this exists.

 

I think it is shocking that this so called support officer has in fact identified you by publishing details which quite obviously only relate to you.

[Kinda]

Hi Mumble

 

Good on yer, as for who to write to your University will have a complaints procedure which you will have to adhere to for any formal complaint. So you need to find out what the correct procedure is.

 

I know with my son we had to complain to the right people in the correct format if we wanted the University to deal with it in terms of their complaints procedure

[Canopus]

Most universities have a lawyer or legal advisor. It would be a good idea to talk to them before confronting the university itself. Find out exactly which offences have been committed and what your legal rights are.

[puffin]

Most universities have a lawyer or legal advisor. It would be a good idea to talk to them before confronting the university itself. Find out exactly which offences have been committed and what your legal rights are.

 

You can often get assistence with legal advice through the student union - or perhaps through a trade union of you are a member

[puffin]

Hope that you got some sound advice/support from your supervisor

[Kinda]

Hi Mumble

 

I googled and found the following link which may be of use for you if you decide to take up a complaint

 

http://www.open.ac.uk/inclusiveteaching/pa...crimination.php

 

 

Half way down the page is some good advice and there are mulitple links off which may also help (I didn't want to list a whole host of links which can be boring).

 

Just found it also covers confidentiality

 

http://www.open.ac.uk/inclusiveteaching/pa...identiality.php

 

Good luck and just remember you are not alone!

Edited February 21, 2008 by Kinda