Cello Health

[medway-lady]

I just logged on and a post asking me to take part in a survey by this company came up. I'm puzzled has anyone else had this and is it put on by NRAS or Health Unlocked or has a third party got access to use this page ? It seems odd. I forgot to say the question popped up when I hit the NRAS logo.

[Matilda7]

I've had the same experience. Very surprising and unwelcome.

[medway-lady in reply to Matilda7]

I don't like it and surprised no one from NRAS or Health Unlocked has responded

very worrying as it is stated its a secure sight. Really !!

[nomoreheels in reply to medway-lady]

Cello Health is division of the Cello Group & bona fide company. The survey invite was set out within an HU template. If you're concerned about sharing data just go into Account settings & untick 'Contact me for research purposes (eg: clinical trial recruitment, surveys etc)'

[medway-lady in reply to nomoreheels]

It should not be necessary to do this and it does not look that Bona Fide to me, on the internet I may be a tall slim blonde. I'm gobsmacked not to have a reply from NRAS as flagged this up yesterday. If a clever company can hack into this, what else have they got access too. Sorry NRAS but after the posting about anonymous information being shared then this looks even worse.

[nomoreheels in reply to medway-lady]

Well, that's your choice but I don't think you can complain when the option to opt out is there. Matilda has received a reply from Beverley, see below.

[medway-lady in reply to nomoreheels]

So have I now, via email which states that they have the same concerns, its if they have gone deeper into the system. Its about security. NRAS are taking this up with Health Unlocked, as opting out would not have made any difference. Its simply an unauthorised post cleverly popping up when people log in. By responding they may have access to my email address and could potentially get into my own files. It is spam !!

[Jacki08]

I can't get it off my phone screen🤔

[medway-lady in reply to Jacki08]

I used the escape key to shut it down on my Mac but really annoyed they may have accessed my posts!

[AllyWelshDragon]

I just clicked the X on the corner and it disappeared!

[sylvi]

If you can't answer one of the questions it won't let you go forward so i gave up on it.xxx

[Bookworm55]

I agreed to take part but once I'd listed my medications it said they didn't need any more participants 'with your profile'.

[Hidden in reply to Bookworm55]

Hmmm - I wonder what that means... It's like a survey that finds out you don't have kids or are over 20 and disinvite you..

[Gigi71]

I also got that message too , but then let me go on to finish, !!! Long survey though. Seemed to want to know how convenient you found taking drugs, inj, pen, infusion orally, at home or hospital, did you need reminders and the benifits or negative's.

[avocadothrower1]

Would be good if someone fromNRAS could confirm if this is a proper surveyor just a bug or virus as we should all be aware of people trying to scam us

[Matilda7 in reply to avocadothrower1]

Very surprised that we have had no response to our requests for information about this survey.I suspect it was there without authorisation. Seems to have disappeared now.

[Zip1]

No it's still there, I have just logged on and it's popped up. Am feeling sorry for myself this morning, I took a tumble yesterday and my hip is now much worse than usual! Sorry for the wings.

[Zip1]

That was winge- I love predictive text!!!

[nomoreheels]

I never respond to unrequested surveys so passed on it though there was an HU green bar to accept so I would think it was an authorized survey.

[Matilda7]

Just had a reply from Beverley at NRAS:

Hi Matilda,

it has not been approved by us and we are currently in discussion with HU to sort things out. Will get back to you when I have more details.

Thanks

Beverley

[SimoneHU HealthUnlocked]

Thank you to everyone that has raised this. We can confirm this is a HealthUnlocked survey, in partnership with a research agency.

We are really sorry to hear that there are issues with it and that the reward system has failed. We have removed the survey and are looking further into this.

A further update will be posted in due course.

Matilda7 nomoreheels Jacki08 AllyWelshDragon avocadothrower1 Gigi71 Zip1 Bookworm55

[nomoreheels in reply to SimoneHU]

Thank you for updating us Simone.

[Clare-NRAS Partner NRAS]

We are about to speak to Health Unlocked shortly and are investigating this situation. We will post a fuller response when we have all the facts. NRAS did not approve this survey and only found out about it late last night.

Be assured we are working hard to resolve the problem.

[medway-lady in reply to Clare-NRAS]

Thank you Clare, I did not see this message when posting just now. I'm thinking of leaving as furious to get this pop up and that in responding they may have accessed my information for private gain. Not the purpose of the group as I understand it. Astonishing thing to have happened.

[Clare-NRAS Partner NRAS]

I can assure you that the market research company will NOT have your email address. I am just going on a teleconference call now with HU and will respond more fully shortly.

[medway-lady in reply to Clare-NRAS]

Thank you. Can I just add that had they given a financial reward to get it people would have needed to give bank details presumably to an unknown company. Really dodgy even with a positive motive.

[Astral in reply to Clare-NRAS]

I got the survey invitation in an email!

[Clare-NRAS Partner NRAS]

Hi all

We have got to the bottom of this and HU will be shortly responding to you all who have commented on this survey.

[matt]

We are very sorry for the confusion this survey has caused and extend the apology to NRAS.

This survey was being done from a respected research partner HealthUnlocked were working with. They were looking to better understand real experiences of RA and the drugs people take. The survey is not related to NRAS.

The email was sent to people we believed would be interested in taking part. The majority of HealthUnlocked members are interested in finding out about research, which is one of the reasons we occasionally invite people to participate. We would like to reassure you that there was no obligation to take part in this and no data, information, or anyone’s email address, was passed on to the company. We (HealthUnlocked) would never do this under any circumstances.

We have sent an email to everyone that was initially invited to take part in this research with further details and more information around the compensation and technology issue. We are reviewing our processes to make sure this doesn't happen again. Thanks for those of you who flagged up the issues with the survey,

[medway-lady in reply to matt]

You have not actually addressed the question it was not an email I had but a pop up message, if it had have been an email I'd be even more annoyed. I do not accept this as being a respected partner it is a market research company which presumably sell on information. This is a shoddy abuse of information gained by dubious methods, I believe this is not an apology but merely trying to justify the lack of control over your own systems.

[matt in reply to medway-lady]

Apologies medway-lady. A small amount of people received a popup too. We would really welcome the chance to discuss the points you are unhappy about directly. Please do send me a direct message with your preferred method of contact.

[medway-lady in reply to matt]

I have to pop out now !! lol. I will get back to you tomorrow

[matt in reply to medway-lady]

Great. Look forward to it

[Gigi71 in reply to matt]

I received the pop up. I decided to take part, it stated you could pull out at anytime. It seemed well conducted if a little long, much on a par with any other survey I have taken. When I saw the posts last night was a little concerned. So thanks for that info.

[Astral]

It was a genuine survey, I got a £20 Amazon voucher.

[Matilda7]

Can I suggest that we are warned in advance if a similar situation were to arise? And that we are given full information about who is doing the survey and why, as one would be if it was a well conducted piece of research.

Just to receive a pop up message, obscuring what one is trying to see, is totally unacceptable to me. It shows a lack of judgement by HU and a lack of respect for the users of this site.