From the engine room ...

Hi @sanguine - the journalist who interviewed us (unfortunately) wrote a version of what we told her... her question was 'how does the website make money' and we responded by telling her that we connect clinical trials to people that fit the criteria. We now *really* appreciate how what is in the paper is faaaaar from what is said. We've called the CT to get the text changed (as technically, we didn't even tell her that)... and are waiting on their response - so will let everyone know when it's updated!

Administrator said:

Hi @sanguine - the journalist who interviewed us (unfortunately) wrote a version of what we told her... her question was 'how does the website make money' and we responded by telling her that we connect clinical trials to people that fit the criteria. We now *really* appreciate how what is in the paper is faaaaar from what is said. We've called the CT to get the text changed (as technically, we didn't even tell her that)... and are waiting on their response - so will let everyone know when it's updated!

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Oh dear!
A cautionary tale, and raises awareness that we should all be wary of talking to journalists then?
In my experience, they tend to have their story before they do the interviews, and just want to report events and interviews to selectively fit the scenario they want.

@Bluetit1802 - yes, it's totally done with consent - when people sign up, they can choose to be informed about: 'Paid clinical trials'. And that is how they are connected with the trials. Similarly you can choose to find out about research, shop offers, updates, etc.

@dannyw - when it comes to passing on details to pharmaceutical companies, we do that in instances such as meter gifting. Or, if you were applying to attend an event - for example, when an insulin pump event is taking place. In regards to the 'underhand' comment, that's simply not true. We don't sell/rent any data - it is used only for the purposes of the application that was made. To receive a meter/attend an event/see if you're eligible for an insulin pump, you would need to consent to allowing the data to be passed across (i.e. I consent to...). If you don't agree, your application is never passed across. We do not otherwise sell/lease data, nor do we intend to. That is annoying, untrustworthy and just not ethical.

When it comes to anything medical or data related, understandably emotions run high - and so they should. Articles like the Telegraph's don't help in appeasing those concerns(!). We have nothing to hide and are completely transparent.

It'd be great if articles such as the aforementioned would focus on some of the actual positives - such as the Type 2 Testing Program - through which, on average, members lose over 6kg and reduce their HbA1c by an average of 1.2%.

Or even the forum, where 70%+ of users after 6 months state their understanding of diabetes has improved - and 33% even state their average blood glucose levels have improved - the future of health in the digital landscape is about connecting and engaging. Where better to ask a diabetes-related question (or otherwise) than a community with over 1.2m years worth of cumulative experience?

Or, even still, the Hypo Awareness Program, where 73% of people who take part improve their understanding of hypos, how to treat hypos, better understand hypoglycemia/blood glucose in relation to driving and how to spot hypo symptoms.

We discussed all of the above with the reporter (and even watched her write it down), however, the reporter did not choose any of those stats, which we are incredibly proud of. *sigh*

@Robinredbreast - we were nominated for the Lloyds Bank National Business Awards for a number of campaigns, including #BloodSugarSelfie, which reached over 4 million people in 7 days, saved a life and enstilled a level of confidence amongst children who were otherwise shy/afraid of testing. The Hypo Awareness Program is also a key reason for our nomination, which is a free educational program that is having positive health benefits. We were genuinely proud to have our efforts recognised.

dannyw said:

Oh there's always some truth there. Do you think this was made up then ? To be honest, my money's with the Telegraph. I understand this is a business and there is fair money to be made from advertising but to pass on member's details to pharmaceutical companies ? A little underhand ?

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I think you misunderstand my previous post. Perhaps my fault. What I mean is journalists seldom report as the one being interviewed would wish. They have an idea, and look to what the interviewee is saying to make it fit.
As to the truth or otherwise of the report in question, I haven't questioned its validity. I only meant to state that journalists seldom publish what the interviewee expected. There is always a degree of interpretation.

@dannyw - getting these press people to change something once it has been written is such an arduous task that we just want them to edit it and we'll be happy. (When they want something, they hound you - but to get hold of them after that is just painful.)
As soon as it's updated, we'll let everyone know (we're checking our email box literally every 5 mins).

@fred1234 - glad that you find the community valuable - the forum is really a fantastic resource. @Sid Bonkers - valid point

With a large community such as this, there will always be ups and downs. One of the things that is a little bizarre is how people go crazy at each other about food (especially carb/low carb). We support low carb - genuinely, it works. However, at the same time, that doesn't mean it's the only way of eating that works.

At the DUK HCP conference this year, I (Arjun) sat next to a chap who was a key contributor to the NHS guidelines for diabetes. When I relayed all of the positives of low carb and the benefit to health, his response was 'Yes, but it effects quality of life'. On asking him to elaborate, he described how, at his practice, he had a number of patients who said that trying to follow a low carb diet was making them 'not enjoy' food - and it effected their mental health. I was amazed as I had never thought about this. Whilst that is a trivial example, it just goes to show that the old adage of 'different strokes for different folks' is appropriate.