Research Project

[SheffieldJane]

I have participated in research projects to do with aspects of our condition as a small contribution. When one dropped int my in - box, headed Health Unlocked, calling me by my real name and obviously having my email address. I responded to it. It was looking at sinus conditions ( I assumed related to PMR/ GCA, so many of us have sinus problems). I expected to be given more information but I was plunged straight into a survey after being told that I would receive £100 Amazon vouchers. After giving some personal detail such as age, I was rejected for the “ research project”. It occurs to me that our personal information is valuable and I felt tricked into supplying it. I would not have responded unless it implied that it had the endorsement of Health Unlocked and was relevant to us. Is there any way we can know that these requests for info have been approved by the Charity before we respond?

[DorsetLady PMRGCAuk volunteer]

One would hope that the charity would put a post about a genuine survey - as it has in the past. I’m in the OMERACT glucocorticoid Impact survey for example.

But I think any survey that offers freebies might be a bit suspicious.

[SheffieldJane in reply to DorsetLady]

I am in one about steroid use, a longitudinal study, I am sure our admin endorsed it.

[Blearyeyed]

Was that today?

I received the same offer , stating it was a HU survey , but to do with another condition , which isn't actually on my Illness List . £100 was offered.

I was going to look it over , but had thought I wouldn't answer just in case until I saw if anyone else reported it as a scam.

It's so confusing sometimes , if it is a scam they seem to be able to infiltrate anywhere.

I probably sound a bit paranoid , but I always feel I have to triple check anything now as you never know .

[SheffieldJane in reply to Blearyeyed]

That was it Bee. I thought there would be an opportunity to decide and I didn’t want to be paranoid, I was thrown straight in. We need to be careful what we share. I will tell you if my bank account is drained. I smelled a rat when the Amazon voucher was offered. I wonder if Admin could check this out? and all requests for help in this way could go through them, in future ( some do) It didn’t mention the Charity, just Health Unlocked was the large heading. I am usually quite canny. 😡

[Blearyeyed in reply to SheffieldJane]

Yes , that's what worries me , but sometimes they do pay for these things with Amazon vouchers so you don't have to share bank details and they are legitimate.

Or , I get to the point they ask for that sort of information and that's when I break off contact .

In reality , any voucher can just be sent with a code via email these days , so there's no reason to share private information.

Have you reported it to Admin , if you have a link you could screen shot it and send them that too.

With any luck you may find out it was valid , you will get your £100 , and HU will learn to communicate things better .

Fingers crossed xxx

[Yellowbluebell in reply to Blearyeyed]

I am checking this. YBB

[SheffieldJane in reply to Yellowbluebell]

Thank you. I do have the email but don’t know how to send it. If it is legit. It wasn’ t very professional.

[Yellowbluebell in reply to SheffieldJane]

If i send you my email address on pm do you know how to forward it to me?

[SheffieldJane in reply to Yellowbluebell]

Sorry Yellowbluebell. I had to go out, but I could forward the email to an email address, yes.

[Yellowbluebell in reply to SheffieldJane]

Will pm you now

[SheffieldJane in reply to Blearyeyed]

No they rejected me when I supplied my vast age. 😉

[Blearyeyed in reply to SheffieldJane]

Ummmm.... I think I'd report it .

YB is on the case now so she may be able to put your mind at ease xxx

[Yellowbluebell in reply to SheffieldJane]

They make these things look genuine when trying to scam if that is the case here so you really didnt do anything wrong especially when its purporring to come from HUx

[SheffieldJane in reply to Yellowbluebell]

Is there a HealthUnlocked email address I can send it to?

[Jamie751]

Hi Jane - this seems to be contrary to the Data Protection Regulations and I suggest that you report it as such. Any individual or organisation in contravention of these regulations may have to pay a hefty fine Good luck!

[Hidden]

I had one too but didn’t bother with it, l didn’t get chance to report it but see YBB has now.

It looked pretty authentic but don’t have Sinus Issues so didn’t pursue it.

Saw a really cheeky one this morning on another Forum in HU - reported that straight away.......

[PMRpro Ambassador]

When these things appear it is pointless telling the Mods - please report it to the HU Support Centre and ask for their advice. As far as I know HU are quite strict about using the forum to recruit for surveys or studies without permission.

[Yellowbluebell]

I have checked and it doesnt seem to be a genuine email from HU so anyone who receives one needs to report it as pro has said. YBB

[Rimmy]

Hope this all works out OK SJ - and thanks for the warning ! X

[GOOD_GRIEF]

Beginning to sound like HU may have been hacked...