Health Unlocked

[Treepie]

Who set up the site? How is it funded? How is it managed?

[RedApple Administrator]

Treepie,

At the bottom of every page there are links to information. For example, you can read about HealthUnlocked here

healthunlocked.com/about

and about their business model here

healthunlocked.com/about/bu...

For more information about Thyroid UK, please go to their main website thyroiduk.org

[Treepie in reply to RedApple]

Thank you ,but the verbiage hides the specific answers.What it does show is that our posts are scanned and information provided to clients that include big pharma.So big pharma is funding the site to some extent.There may be nothing wrong with this but its rather ironic that many posts are highly critical of big pharma.

[alangardner]

hi there treepie, I don't know about healthunlocked .... but T.U.K. was started by lyn mynott and louise warville [ I believe in lyn's front room ] , it is a registered charity and receives NO other funding other than what it can raise itself , and also works on extremely limited funds . which is why as someone that has received so much help/empathy & understanding from them [ and many others ] to get my lady through that damn great tunnel called thyroid to raise much needed funds for them through a collection box at home and in a local shop [ funds raised so far approx. £ 4 - 600 ] , but also my regular ali-can collection - which also allows other users the chance to get a smile on a few faces as well as some SURprizes ...... check on the details ...... , and I will continue as long as I possibly can .....alan x

[Treepie in reply to alangardner]

Hello Alan, I am a member of TUK and understand what it is about and the good work it does.

Red Apple has led me in the right direction, up to a point.It seems the posts are scanned for clients which include big pharma which we spend alot of time condemning!

[shaws Administrator in reply to Treepie]

I think what we condemn is the inability of the British Thyroid Association's guidelines to allow us even a trial of 'other' thyroid hormones if levothyroxine doesn't improve our health.

They make False Statements regarding NDT but many on this forum have found to their joy that it is definitely false.

Despite about 40,000 on this forum who are indicative of the failure of levothyroxine are having to source their own way to 'good health'.

It is a ridiculous situation. We are not being 'fashionable' but want freedom to choose our own way to health, thus permitting the NHS not to waste money on useless tests/medications instead of knowing and alleviating the awful symptoms by permitting 'named-patient' prescriptions. Cheaper all round for the country/patients in general.

[alangardner in reply to Treepie]

that could be a good thing , because, if the big pharma's can gain some 1st hand info from actual people that suffer as well as side effects [ that may not have shown in their own tests ] and if they take these on board maybe -- just maybe -- it will help others in the future with their treatment ...... just my thoughts though ......alan x

[Treepie in reply to alangardner]

It could be.After over a year of using the site I started to wonder how such a free service was funded.No obvious adverts although Blue Horizon appears in the posts from time to time. Not enough to pay to maintain such a comprehensive network.

I was put forward for the DESMOND programme for new diabetics.A sheet on foods the nurse gave me had a small ad for flora at the bottom.I rang the programme organisers to book a place in December and asked who was funding it.I was told the NHS but I remain suspicious. I was told It would be three months before I would be able to attend .Five months later I have heard nothing.Maybe they think I will ask difficult questions.

I think ,despite we are mostly anonymous, we should be aware of how the detailed contributions on the site are being used by the site creators.It is a business not a charity.

[alangardner in reply to Treepie]

that may be true for h.u. , but definitely not for t.u.k........ it is a self funding charity

[Treepie in reply to alangardner]

I do understand that Alan .TUK will have to follow the Charity Commission rules.It was only HU that I was seeking information about.

[LouiseRoberts in reply to Treepie]

BlueHorizonMedicals posts here (once in a while) with our permission as we have a close working relationship.

There is no advertising revenue involved, although Thyroid UK does receive a regular donation from BH as long as people keep using them for testing.

If you have further queries about HealthUnlocked and how it is run and funded I would suggest that you contact them directly at [e-mail] as they will be able to help you much more than either the members of the group or the Admin.

Louise

[Treepie in reply to LouiseRoberts]

Thank you Louise,I was not being critical of Blue Horizon they provide a helpful service to many on the site. It was just that it was the only " advert" I have noted and I thought The company had no direct relationship with Health Unlocked.

HU also provide a very useful service but as the Romans said cui bono.

[greygoose in reply to Treepie]

Well, I do, anyway! lol

[Treepie]

I have read much denigration of "greedy " big pharma on here on drug prices and falsified or misleading research.I am not saying that is wrong.Just ironic.

Yes,I agree with what you say about the BTA.

[Marz in reply to Treepie]

I don't think Big Pharma will care a monkey about our observations about the way they run their businesses. They do not care a jot about people - it is the dollar sign that matters .... We are just irritating little flies that must be shooed away and put on the next block buster pill ....

[Treepie]

They support HU for a reason. We might not be clear what the reason is!

[shaws Administrator in reply to Treepie]

I believe TUK is the most active, with the most members, on HU, so at least if the pharmaceutical companies are 'looking in' let's hope they are 'learning at the same time' and taking note of the comments.

[Nanny23 in reply to Treepie]

The people here on health unlocked are amazing. They are kind and try to help others. That's my concern. Should be yours too.

[Treepie in reply to Nanny23]

Nanny ,you have the wrong end of the stick.The people who post are just as you say they are.I was simply trying to find out how such a web site is funded.If you read the linkedlin link on Framboise's post you will learn about the clever serial entrepreneur behind it.It is not entirely altruistic but a money earner from the information we provide.Nothing necessarily wrong with that but worth knowing.

[Treepie]

We can hope.I think its likely that HU is commissioned to carry out data searches for specific information and to find patients for trials.Nothing wrong with that but I would like to know.Louise suggested I contact them direct which i may get round to when my long job list is complete.

[LouiseRoberts in reply to Treepie]

You might be interested in this:

blog.healthunlocked.com/tag...

[Treepie in reply to LouiseRoberts]

Thank you,i thought that was one money earner.Framboise ( below) also had an interesting Linkedin link.

[Framboise]

Treepie there was a thread on this about two years ago which I can't find at the moment, but will keep looking. I checked into it at the time and found it was started by a person wanting to bridge the gap between patients and providers, it all seemed very hazy and full of pleasant sound bites, but was actually a way of gathering information for someone or something. I doubt they'd learn much about us as individuals but might see a pattern of scepticism and despair on some of the forums. Then again they wouldn't care about that. Probably the founder's aims were originally laudable but who knows what the information is used for. I look on it as a way of exchanging experiences, seeking help and giving help where possible.

Here's the CEO and co-founder:

uk.linkedin.com/in/jorgearm...

Perhaps I'll connect with him on LinkedIn to find out more

[Treepie]

Interesting read ,a serial entrepreneur.