BTF have responded to the email I sent them regarding their recent survey.
They did seem to understand and accept that it was less than perfect in certain areas. (I did not question the actual survey itself.) The reply ended:
Thank you once again for contacting us about this survey and for raising these important concerns. The points you made will lead to changes in the way we conduct surveys in the future. If you have any further questions please let us know.
For anyone unsure what this is about, here's the previous thread about this survey healthunlocked.com/thyroidu...
"The points you made will lead to changes in the way we conduct surveys in the future"
Hmm. What we really need is an improvement to the actual guidelines, not to their method of conducting surveys!
Of course I haven't seen the whole of the reply, but it looks like a typical politician's response. Make it seem you are actually going to do something while busily preserving the status quo!
Hope I'm wrong of course.
Do we still have until the end of the month (this Sunday)? I haven't got around to sending an email yet.
They did consult with the Information Commissioner's Office - which was appropriate.
I think we are into benefit of doubt until the next BTF survey.
Jnetti, I think you might be confusing the somewhat shoddy BTF survey on hypothyroidism (which was withdrawn days ago now), with the ITT survey about the Draft Nice Guidelines. The ITT survey is still open as you say, until 30th June. ITT have done an excellent job on their survey in my opinion!
Oops, yes, there's been so much talk about the ITT one I didn't notice it was something else! 
Yes, the ITT survey was good because they left space for comments.
I don't even know what the BTF survey is!
One gripe I had with the ITT survey was that my responses were not retained in a form I could easily copy. Maybe I missed something but having spent an hour or so completing it I found it annoying that I ended up with no record of the information I had supplied to them.
I too would appreciate that.
It would be a polite and pleasant addition.
I think that anything we complete online should offer ‘send a copy to an email address’ option on completion. If I get that sort of consideration when shopping online I should certainly get it in healthcare and research. The extra effort and cost is negligible and it allows the data protection legislation to be more elegantly met as I know exactly the data held.
I used my desktop and copied and pasted onto a Word document with the ITT questions. That's probably why it took so long, and possibly why it kept cutting out!
I understand what you are saying and appreciate it. The survey was compiled in limited timescale to give people the chance to respond. And an excellent job done. A good point made and I will pass it on for consideration, for any further surveys. I'm not sure of the limitations we were faced with, but I am so pleased to hear that so many of you found it to be a well presented survey. Thank you for the tag RedApple Pamela0106
When I designed and created this survey on google forms I had zero funds and limited knowledge on how to work it all. I’m just a thyroid patient too remember like all the other ITT folks and ITT isn’t a funded organisation.
However, since seeing this feedback I’ve researched and skilled myself to be able to turn on a “send copy of response” function to the respondent. This will be included in any future surveys I create for ITT. Thanks for your honest feedback. It’s always welcomed and wherever possible we’ll implement your suggestions xxx
Thanks Pamela.
And a fabulous job done. I didn't even realise it was in Google forms! Not that means much to me. Tech has got too far ahead of me. This is a learning curve for us all and I'm so glad Pamela0106 is so clued up! All credit to you Pamela0106.
Ursula - it was the only survey tool I could use for free that wouldn’t limit the number of responses like what happened with the BTF one. 😉 xx
It worked well Pamela. Wouldn't have been anywhere near as good if left for me to do...ha ha...in fact...would not have a clue. You did a great job, well thought out.
Edited to change from I to It! I cannot claim to have worked at all on this!
Wow, very alarming behaviour by an ex-member in the thread RedApple posted! Thank you to both RedApple and helvella for sticking up for all of us in the thread!
Its a big bugbear of mine when legitimate organisations behave in a way we might expect of scammers. If this survey really was run by the BTF, no matter how badly we might think of them here, I'd hope they would show basic professionalism! Possibly a student project or something they unwisely agreed to associate themselves with. That or VERY smug medics thinking the basic rules of courteous conduct don't apply the them!!
I've conducted internet research myself in the past, and can definitely confirm that creating multiple short term accounts and deleting them quickly is no kind of reasonable practice! A person conducting research should not make research participants feel uncomfortable. The more ethical they are, the more they will bend over backwards to fit in with the expectations of participants.
The madness that is politics. Never mind the way they conduct surveys; tackle the issues raised instead.
Thyroid and other autoimmune diseases patient survey from the University of CambridgeSurvey to ensure the right health information is available for sharing 
Hashimoto's Disease SurveyHypothyroid Patient Experiences SurveyNew Survey addressing the problem of non-adherence to medication for people with thyroid or other diseases.
BTF is British Thyroid Foundation.
