HU showing users how many miles apart... - Lung Conditions C...

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HU showing users how many miles apart we are!

10 years ago•21 Replies

I am really shocked and angry that HU decided to use our post codes to show how many miles we are from other users without first asking - surely there should have been an 'opt in' rather than an 'opt out' button!? There has been no problem with meeting and sharing where I live with fellow board users that I have struck up friendships with - we tend to do this by chatting and exchanging any personal info via the Private Message facility. And I am quite public about living in Cornwall - but that is for me to decide and if I want to share my location to any closer degree I do so via Private Messaging. I have developed friendships with a few people here via PM's , exchanged info and met up in 'real life'. Considering the uproar that the recent Health Care Data fiasco caused i am incredulous that they have done this and that patients are going along with it. You may be happy to trust your location to anyone using the site to this degree and that is fine - but still I feel it should have been an 'opt in'. I am so put off by what they have assumed on my behalf that I am now also opting out of the option to:

"share my anonymous health experiences with HealthUnlocked and its research partners (eg. academic institutions, healthcare commissioners and pharmaceutical companies)"

I know this is how they make their money from the site so that BLF and others get it for free, but I can't help but feel uneasy about a company that will use our data first and ask after.

Finally anyone wanting to meet up in real life is always welcome to contact me.

Written by

Parvati

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21 Replies

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stone-UK10 years ago

I agree with all you say, the site is geared so you have to opt out, providing you know.

As you have not locked you post are you aware that anyone can share you post on Facebook and Twitter and I mean anyone. Member, non member causal visitor.

At the bottom and to the right of any unlocked post there is the option to share with Facebook and Twitter.

Parvati• in reply tostone-UK10 years ago

Hi Stone - no I wasn't aware of that - thanks! In general I am very easy going about sharing info. In the past here, and in my blog, I talk about where I live etc. But that is a matter of choice for each one of us, and it was the presumption on HU's part that made me see red. I only became aware of it when i read my HU email this morning - something I rarely do so it was sheer chance really. Also the whole thing is so uneccesary - any of us that strike up a friendship already share what we wish in PM's. I am happy to share my data in the interest of improving things for COPD -whether via research or anything else - but I would like to reserve the right on when and with who.

10 years ago

I agree with you Parvata in principle that there should be an opt out button, but practically, Cornwall is a very big area so I doubt anyone could trace you from that. I am in the next County to you.

I always lock all my posts as I don't want the risk of anything I say going viral. x

Parvati10 years ago

Hi coughalot - I often share the town I live in etc. I just like to decide for myself where, when, with who etc. Anyone can join this site and put in any post code - and having a lung disease or any other condition doesn't make us all good people - there will be all sorts here from the pretty good to the pretty bad , just as in the real world. We used to be 'invited' to share our location but now they are doing it for us without consent - those who join the site but rarely visit, for example, may not be aware and able to opt out for some time. It seems uneeded as we have always been able to develop friendship and exchange more personal info via PM's. I understand that there will be different views on this but that's exactly my point - because we have our own feelings on it they should have offered the option rather than applied it to all members without consent and leaving it to them to opt out. It was the automatic 'opt in' that caused the furore about the CareData system a year or so ago - yet HU seem not to have understood the basics aout sensitivity and decencey when it comes to sharing folks personal data willy nilly.

aberdeenman10 years ago

hi I thought everyone had to opt in for them to add your name to that. I can remember getting an email about it and said if I was happy to be in it, to insert my postcode.

tam

Parvati• in reply toaberdeenman10 years ago

They've changed it - enow everyone has been put 'in' by them, and has to opt out. I guess if you are already 'in' voluntarily then they won't need to send you an email to let you know.

aberdeenman• in reply toParvati10 years ago

hi parvati it doesn't show where anyone lives it just states how many miles, people are from you.

tam

10 years ago

I suspect that it is a breach of the Data Protection Act as the condition on sharing information only applies to professional contacts.

Parvati• in reply to10 years ago

To be honest I don't have any detailed knowledge of the Act, but would presume they got legal advice first - if CareData could opt us all in I guess they can do same - the 'you can opt out if you wish' message seems to cover their backsides in both cases.

• in reply toParvati10 years ago

Thanks Parvati. I went into my profile and as I haven't given them my postcode I doubt if they will be able to share it. I still think that it is a presumptious and unnecessary thing for them to do. As other members have pointed out. Many of us freely speak of our location in our posts. Have a lovely day.

Tetrazzini10 years ago

Very good point. Thanks for raising it. I have now used my profile data to opt out of the location item. Privacy is very important on the internet.

whit10 years ago

surely people can only see the town you live in not your home address

Parvati• in reply towhit10 years ago

It lets others know 'how many miles' you are from them. When I checked it I apparantly had a couple of people with in a mile or two of me - but it listed folks online name and mileage in order from nearest to furthest away - I didn't look at the whole list but I know it went from a mile or so away to the other end of the country. Have you all had it yet? If not they must be rolling it out in stages - also it is every HU site they are doing it to, not just BLF. And even if it was 'only the town' surely it's up to me to decide what I do or don't share. As I said before, I am generally happy to share the town where I live, and to exchange personal info whether email, phone etc with anyone I strike a friendship up with - and I do so in PM's - but it is for me to decide - not them. Just my opinion of course.

stone-UK10 years ago

For members who have not seen.

blog.healthunlocked.com/pos...

Read the comments.

Parvati• in reply tostone-UK10 years ago

Just had look back at my email (see below). Checked your link - despite their blurb i still see no reason for it as we can already share our info when we choose. Also when I went to have a look at my details the opt in option was already ticked and I had to change it to the opt out one - I don't know how that happened as I had never 'opted in'.

Parvati10 years ago

Ah - just realised - email told me 'You can now see who from your community lives nearby! Check it outTell a friend' - then when I saw it I could 'opt out'. I am thinking that perhaps it didn't yet show my location to everyone else? It also said something about the location facility being in 'Beta' phase ie. not finally completed yet? Still don't like it though, and will continue to keep my freedom to choose when /where I share info.

Nikkers10 years ago

Hello Parvati,

I've just checked into my account details and there's privacy box you can tick if you don't want your post code seen! Nikki

Parvati• in reply toNikkers10 years ago

Hi Nikkers - Yes I know - i immediately 'opted out' as I had never knowingly 'opted in ' in the first place.

Nikkers10 years ago

Oh ok. I think I must have luckily ticked the boxes when I first joined, but can't remember doing it.

Parvati10 years ago

Anyhow - so long as they are not displaying any of my details now I am happy enough to leave it there. Did consider closing my account but I do like to pop in and have a read now and then - and read/send my PM's. I can only add that my dislike of the 'show everyone..' option does not mean I am averse to striking up friendships here. One member I became close friends with here was the late 'notlocal', who became my real world friend 'Bobby', despite a 2 hour train journey between us. Sadly on Saturday I will be going to say a final good bye at his wake.