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Research request

User
Posted 07 Dec 2018 at 20:20

Hi Ive been e-mailed by someone called Ellie who says she works for an agency  involved with PCUK and would like to talk with me about the forum as part of some research she is doing. Has anyone else had a request. With all the recent trolls I wasn’t sure if she is genuine or not

Bri 

User
Posted 08 Dec 2018 at 02:54
I had a long chat with Ellie (who emailed first to ask if I would be happy to talk with her, what’s the problem? - How many other spam emails do you get every day, which you just ignore?).

She said she had moved from Cancer UK to PCUK and is a web developer, like me (some of the time).

I pointed out many of the faults on this bulletin board format, which quite surprised her, and she said there will be changes to the whole website, including this forum.

I told her: “People won’t like it when you change it you know, even if it’s for the better. In fact I’m still in shock from when they changed the format of the Daily Telegraph around three years ago!”

Cheers, John.

User
Posted 08 Dec 2018 at 22:21
Nothing to do with how nice the contact person is. Did the agency need to have checked permission was given to pass email addresses on?

Ray

User
Posted 12 Dec 2018 at 08:56
As this thread might be read at some later date I post an extract from email received from PCUK:

"I have spoken with our Data Protection Officer and after careful assessment of the impact, he has taken the decision that we will not, on this occasion, be reporting ourselves to the ICO.  We will, however, document the incident and record the impact to the individuals concerned. So, we can learn from our mistake and address any weaknesses in our internal controls and procedures."

This assures me and hopefully other members that safeguarding our personal details are taken seriously.

Ray

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User
Posted 07 Dec 2018 at 21:19

Hi Bri,

I can confirm the email and request is genuine and has been made with the approval of Prostate Cancer UK.

Best wishes,

Carol

Digital Manager

Prostate Cancer UK

 

 

User
Posted 07 Dec 2018 at 21:40
Ok thanks Carol

Bri

User
Posted 07 Dec 2018 at 21:44
Bri. I asked PCUK via on-line form if they gave my email address out- no reply. Giving permission to message is one thing but isn't giving out email address wrong?

Ray

User
Posted 07 Dec 2018 at 22:11
I’ve had contact. She was lovely. All short and sweet contact with limited questionnaire. I was advised appropriately at all times

If life gives you lemons , then make lemonade

User
Posted 07 Dec 2018 at 23:49

Originally Posted by: Online Community Member
Bri. I asked PCUK via on-line form if they gave my email address out- no reply. Giving permission to message is one thing but isn't giving out email address wrong?

Ray

I think you may be right Ray. Perhaps Carol can clarify, particularly with the recent changes in data protection legislation 

Bri

User
Posted 08 Dec 2018 at 00:20
Yes it is a breach of DPA 2018 unless when we joined, we were asked to give explicit consent for PCUK to pass our details to other organisations for the purposes of research. It was 10 years ago for me but I don't recall being asked for that kind of consent and I probably wouldn't have given it. Technically, we can contact the ICO and PCUK could be fined a quarter of their annual income.

But it is a charity, Ellie is very sweet and if it helps to improve the forum I am all for it so I won't be contacting the ICO.

Something for Carol & colleagues to think about in future though.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Dec 2018 at 02:54
I had a long chat with Ellie (who emailed first to ask if I would be happy to talk with her, what’s the problem? - How many other spam emails do you get every day, which you just ignore?).

She said she had moved from Cancer UK to PCUK and is a web developer, like me (some of the time).

I pointed out many of the faults on this bulletin board format, which quite surprised her, and she said there will be changes to the whole website, including this forum.

I told her: “People won’t like it when you change it you know, even if it’s for the better. In fact I’m still in shock from when they changed the format of the Daily Telegraph around three years ago!”

Cheers, John.

User
Posted 08 Dec 2018 at 09:50
Thinking about this they may be covered if the agency Ellie works for is “sub-contracted” to do this work on behalf of PCUK.

John the problem is that GDPR was introduced to protect our privacy and that has to be legally respected. Most of the spam e-mails you get are a result of other agencies sharing your data which is now illegal

Bri

User
Posted 08 Dec 2018 at 10:03
Bollinge you are too new to know the history. This is the new forum, having been redesigned after a ridiculously protracted process which involved some of the members in a working party. That’s why sometimes links are shared from a locked thread. The old forum had lots of glitches but some of us don’t like the new bits - private messaging, the fact that you can’t see who has read a thread, and the search function which worked fine in the old format but is now a joke.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Dec 2018 at 10:08
If Ellie’s organisation has been sub-contracted PCUK needed our consent. If she is temporarily employed by PCUK it is fine. I am relaxed about this breach of my data rights if that is what it is, but not everyone would be and PCUK has been a little naive if they have passed on our contact details without thinking. The first school to be fined under the new legislation got off lightly with £80,000
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Dec 2018 at 14:19
It isn't just health professionals. I am delivering training on aspects of this to local authorities, schools, charities and have spent the last two weeks embroiled in a case with the ICO, DfE and a private education consultancy.

Naive but organisations will get the hang of it eventually.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Dec 2018 at 15:36
Whilst this is designed to help confidentiality +, it imposes a lot of extra work on firms, some of which have had to employ a person specifically to deal with all the repercussions and the rules are still under review by a European Working Party. It even has impacted me in a small way at my lowly level of Group Leader of a section of U3A.
Barry
User
Posted 08 Dec 2018 at 16:07
Are you trying to bring Brexit into this forum, Barry?

Can’t imagine you at a lowly level of anything!

Cheers, John.

User
Posted 08 Dec 2018 at 18:38

We can’t blame the EU this time, or even Brexit. Our government wasn’t forced to adopt GDPR but chose to and has gone much further than other EU nations by ratifying the DPA2018 as well. I won’t complain about the new legislation as I was getting pretty tired of unsolicited sales calls and emails and under the new Regs and legislation it is much easier to share information without consent in child and adult abuse cases. Vulnerable people are safer and Facebook isn’t allowed to sell my details to other companies ... what’s not to love.

U3A should have bought me in Barry - I would have had it sorted in a jiffy 🤣

Edited by member 08 Dec 2018 at 18:39  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Dec 2018 at 19:23

Quote:
LynEyre;206168

U3A should have bought me in Barry - I would have had it sorted in a jiffy 🤣

Well I am sure U3A would welcome your help if that constitutes an offer!!

They asked me to go on a, 'Beacon' course but I declined as I have other priorities, so I have passed some of what was asked of me to the next person up the chain https://www.u3a.org.uk/177-beacon/386-terms-and-conditions-for-beacon-user-u3as

 

My brother's wife is an Accountant and told me how much extra work this has caused at the firm she works for and for others also.

No criticism of EU on this one John and I have been careful to avoid 'Brexit'.  We hear enough from other sources and it is such a contentious subject that I feel it is best not to introduce it here. (Somebody did this once and subsequently apologized for doing so)

 

NB Link I gave doesen't work when I tested - dont know why?

Edited by member 08 Dec 2018 at 19:35  | Reason: Not specified

Barry
User
Posted 08 Dec 2018 at 22:21
Nothing to do with how nice the contact person is. Did the agency need to have checked permission was given to pass email addresses on?

Ray

User
Posted 09 Dec 2018 at 00:23
Probably - and should also have provided us with an explanation of how our data was going to be stored, when they are going to delete our contact details and should then have asked us to give explicit signed consent. But hey ho.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Dec 2018 at 20:52
Reply from PCUK

Thank you for getting in contact with us. We don’t share our supporters’ details with other organisations except for a small number of companies who work on our behalf.

Ray

User
Posted 11 Dec 2018 at 00:24
Hummmphh
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Dec 2018 at 08:56
As this thread might be read at some later date I post an extract from email received from PCUK:

"I have spoken with our Data Protection Officer and after careful assessment of the impact, he has taken the decision that we will not, on this occasion, be reporting ourselves to the ICO.  We will, however, document the incident and record the impact to the individuals concerned. So, we can learn from our mistake and address any weaknesses in our internal controls and procedures."

This assures me and hopefully other members that safeguarding our personal details are taken seriously.

Ray

User
Posted 12 Dec 2018 at 09:47
I agree Ray. I think this matter should now be closed. Maybe the moderators should lock the thread or even delete it. As the OP I would be happy with either

Bri

User
Posted 12 Dec 2018 at 13:49
Brian

A sensible suggestion.

I just want to add that https://prostatecanceruk.org/about-us/terms-and-conditions/privacy-statement does give all the necessary information to cover how PCUK deals with out data and contacts us. I believe in this case they were safely within the bounds of this statement but it could do with being a bit more visible.

P

 
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