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Old 22-08-17, 02:40 PM   #1
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Default Moving from Message Board

Will you be part of a new online community for Huntington’s disease?
Do you want to ask questions, get answers and connect with other people online?
Later this year, we’ll be replacing our current message board with an exciting new social network for the Huntington’s disease community.
This new online community is your community. We really hope that you’ll want to get involved. A big part of the support available to people affected by Huntington’s disease is the encouragement, friendship and advice that you share online.
Your new online community will live on the HealthUnlocked website. https://healthunlocked.com
HealthUnlocked is the world’s largest social network for health. The site is completely free to charities, users and visitors. HealthUnlocked communities are designed to empower, engage and inform. 75% of people joining HealthUnlocked report increased confidence in managing their health – because of their online community.
Your HealthUnlocked pages will include new features, will be easier to navigate and more user-friendly. You’ll still be able to see previous posts from our current message board on HealthUnlocked.
Our online community has been growing for over ten years. We’re making this change based on feedback from current message board users.
We hope that you’ll want to be part of this next step and get involved in HealthUnlocked for Huntington’s disease.
We will be looking for volunteers to support the new community; people who feel they are able to spend time online, welcoming new people to the community and supporting them from their own experiences. If you would like to get involved please let us know.
We’ll be sharing more details about how to register as part of your HealthUnlocked community soon.

If you have any questions, please contact Bill.
bill.crowder@hda.org.uk
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Old 22-08-17, 05:03 PM   #2
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Default Re: Moving from Message Board

I spoke to Bill earlier today having seen the post.

My main question at this stage was what will happen to all the posts already in here?

Bill reassures me that all the posts (these active ones and those in the Archive area) are expected to be migrated across to the new website with some sort of search facility to access.

I have registered on HealthUnlocked and will be doing some of my own user testing under my Osteoporosis diagnosis as The National Osteoporosis Society use the platform.

Watch this space as they say
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Old 23-08-17, 08:08 AM   #3
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Default Re: Moving from Message Board

I will wait and see but ....yet another HD website....cant keep up.
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Old 23-08-17, 11:43 AM   #4
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So....is the message board here just going to vanish? Or is it that if you want you can also go on HealthUnlocked? Having had a quick look at it and the page after page of alphabetically listed conditions....I don't like the look of it at all. It's like a massive machine that you'll just get lost in and boy does it look dodgy to an old dinosaur like me. Not happy at all..........
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Old 23-08-17, 12:48 PM   #5
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How does it work with data protection ?
It seems a generic site very strange
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Old 23-08-17, 01:34 PM   #6
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Default Re: Moving from Message Board

.
Shiraz, don’t despair - new [or newer] technology is good for you. The HD Community within HealthUnlocked should operate, sort of, like private groups on face book - I think.

It will certainly be interesting to see whether the new “Social Media” type approach will generate the interaction required to make it a welcome hub of knowledge and information for UK [and global] HD individuals and families.

I’m sure some of the major questions raised will be “Is it safe and secure?” and “Will intruders be able to view my posts?”

Several of the HU Communities seem to be “open” and anyone can join. I just get the initial feeling that it’ll be an open book - even though membership is required.

We, in the HD community are always looking for answers and assurances - and although we are always calling for “greater awareness” it’s not to be at the expense of hd-individuals or hd-families.

I see that the HealthUnlocked Huntington’s Disease Community has one Andy Capp type member who seems to be suggesting that “balance” is the key. Aye, Andy lad, that’s the way.

And as Trish says, it is imperative to keep available the archive of valuable hd-information and advice contained in 10 years of messages from a rolling membership that has reached 5,607 with 45,567 posts.

The HDA Message Board has only had 35 member visits in the last month.

The HDA Message Board has only had 111 member visits in the past year.

This is a very low interactive level compared to the first 10 years [2006-2015]. Has everyone, I wonder, already migrated to the many HD open, closed and secret groups currently available via the many global mobile media platforms?

.
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Old 23-08-17, 01:38 PM   #7
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Default Re: Moving from Message Board

Quote:
Originally Posted by shiraz View Post
So....is the message board here just going to vanish? Or is it that if you want you can also go on HealthUnlocked? Having had a quick look at it and the page after page of alphabetically listed conditions....I don't like the look of it at all. It's like a massive machine that you'll just get lost in and boy does it look dodgy to an old dinosaur like me. Not happy at all..........
The threads from this message board will migrate to HealthUnlocked when it becomes live. You will be able to search Huntington's Disease Community and that will get you on the page. You will then be able to write a post. The current message board will close down and HealthUnlocked will be the new one.
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Old 23-08-17, 01:55 PM   #8
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Quote:
Originally Posted by jaq View Post
How does it work with data protection ?
It seems a generic site very strange
Direct quote from HU Terms of Engagement

HealthUnlocked will not share personal details, such as email addresses, with or on behalf of other individuals, organizations or research partners without the users’ consent.
HealthUnlocked will protect users’ personal details using recognized data protection tools and practices.

There is also a security policy and a privacy statement which give more details.
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Old 23-08-17, 05:05 PM   #9
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Default Re: Moving from Message Board

Quote:
Originally Posted by jaq View Post
How does it work with data protection ?
It seems a generic site very strange
Quote:
Originally Posted by Moderator View Post
Direct quote from HU Terms of Engagement

HealthUnlocked will not share personal details, such as email addresses, with or on behalf of other individuals, organizations or research partners without the users’ consent.
HealthUnlocked will protect users’ personal details using recognized data protection tools and practices.

There is also a security policy and a privacy statement which give more details.
It does seem a generic site Jaq

But, from having a look around, in order to post you need to be a Member. And you also need to be in the area hosted by the individual organisations so people wont stumble upon any info a person is posting unless they are minded to go into the area where the posts are displayed.

Exactly like this place, it seems we are only identified by the amount of information we wish to disclose. That includes the name we chose, if we put a photo in, and how much detail we give in our posts about ourselves. The HDA MB has always been a place where anyone be they a Member or not can look at what people have posted so I suppose it's much of the same.

When I registered I only needed to give my name and e-mail address and no other details. I have not clicked on the area saying I am happy to see who is near me etc but I am guessing, if I did, I would have to enter my location (as in what part of the world/country) and then I would only be able to share that with others who have given their locations. I may try that later on the NOS (Osteoporosis community) which I am dabbling in at the moment.

I don't know if every hosted site is very much the same but I can see some benefits and some negatives already. Needs more investigating though, and it won't be until it's up and running that we will know I suspect.
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Old 23-08-17, 05:20 PM   #10
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Default Re: Moving from Message Board

Quote:
Originally Posted by Allan View Post
.

I’m sure some of the major questions raised will be “Is it safe and secure?” and “Will intruders be able to view my posts?”

Several of the HU Communities seem to be “open” and anyone can join. I just get the initial feeling that it’ll be an open book - even though membership is required.

And as Trish says, it is imperative to keep available the archive of valuable hd-information and advice contained in 10 years of messages from a rolling membership that has reached 5,607 with 45,567 posts.

The HDA Message Board has only had 35 member visits in the last month.

The HDA Message Board has only had 111 member visits in the past year.

This is a very low interactive level compared to the first 10 years [2006-2015]. Has everyone, I wonder, already migrated to the many HD open, closed and secret groups currently available via the many global mobile media platforms?

.
I suspect you are right Allan.

I was part of the earlier days before FaceBook and Twitter became the monsters they now are (in size terms) and the moment people started shifting over to those places it seemed like they were the places to be

Sadly, I don't think this place is underutilised where there are fewer people with HD, it's just there is more choice. I'm hoping HU has all the 'place to be' merits and can be more fluid and interactive than here.

Not that I come in as much as I used to but it was a pain when my Private Message box was getting too full so I basically switched PMs off. This MB is what I would call 1st generation whereas things have moved on.

I'm very nervous as to how the HU navigation will be able to cope with searching on several thousands of dormant messages migrated from here as I would have thought they would need to re-group them into the headings that apply rather than a open search box and we know too well a great deal of posts that may have been opened/commented on under one Forum heading may well have been better listed under another Forum.
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