Survey BTF on state of thyroid treatment - Thyroid UK
Survey BTF on state of thyroid treatment
Have completed this survey, at least you get an opportunity to comment on your care or lack of it in the NHS!
Whether anyone will read it or take note is another thing!
There is nothing to say who has started this survey and why. Do you have any further information?
In my view, it is unethical to produce a survey which does not clearly identify the people/bodies responsible for it. Who will hold the data collected? Who will use it? What for? Who is the Data Controller?
I shall most certainly NOT be responding to it at present.
Hi Helvella I understand your concerns but there is no identifiable data collected. Worth looking at BTF and then the survey to see if you think you can be identified and your personal data is processed. I would actively encourage people to give views on their treatment.
ico.org.uk/for-organisation...
The survey is not subject to GDPR because there is no personal data that is identifiable that is processed. I will get some more information on the survey and have this posted so you can then decide if you can support it. I've closed one account and will be closing this account on HU after that post. I appreciate that more information could have been put up but the fact that it was so forcefully put down has made me want to leave this thyroid community.
I have seen all too many surveys which only ask for details at the end of the survey.
A simple statement at the start of the survey - identifying who they are and that they are claiming exemption from GDPR - would have made all the difference.
helvella I looked on the BTF website, assuming there would be some clear explanation/info there about this survey. But no. The only thing I found was this entry in their Tweet feed: Are you, or your child, living with #Hypothyroidism (underactive thyroid)? We would like your views for our survey to help inform future research and bring about improvements for patients. Thank you for participating.
#NotGoodEnough 
BTF page:
Levothyroxine Replacement in the 21st Century
This survey is now closed - we needed 1000 responses, and we got them... and in record time! Thank you to everyone who participated in the survey - we're grateful for your input which will help to inform the development of treatment for hypothyroidism.
Although we have been limited to collecting 1000 responses to this online survey, we are still able to collect your comments on current treatments for hypothyroidism and use them for this project. If you would like to share your views please send them to info@btf-thyroid.org by 1 July 2019 using the subject heading 'Levothyroxine replacement survey'.
Hypothyroidism (underactive thyroid) affects many people worldwide and yet patients’ reported satisfaction levels with their treatment and care vary widely. If you or your child have been diagnosed with hypothyroidism please take part in our survey, which will take less than 5 minutes to complete. Your feedback is important - your views will help to inform future research and bring about improvements for patients. Thank you for participating.
Hi I only know it’s the BTF and can be found on their website and twitter feed. I’d actually encourage people to do this because there is no collection of identifiable personal data.
Shingleway, "I’d actually encourage people to do this"
Are you connected to the BTF in some way?
No not at all but I do think they need to hear views of patients who may not think Levo works
From BTF page on surveys
Levothyroxine Replacement in the 21st Century
This survey is now closed - we needed 1000 responses, and we got them... and in record time! Thank you to everyone who participated in the survey - we're grateful for your input which will help to inform the development of treatment for hypothyroidism.
Although we have been limited to collecting 1000 responses to this online survey, we are still able to collect your comments on current treatments for hypothyroidism and use them for this project. If you would like to share your views please send them to info@btf-thyroid.org by 1 July 2019 using the subject heading 'Levothyroxine replacement survey'.
Hypothyroidism (underactive thyroid) affects many people worldwide and yet patients’ reported satisfaction levels with their treatment and care vary widely. If you or your child have been diagnosed with hypothyroidism please take part in our survey, which will take less than 5 minutes to complete. Your feedback is important - your views will help to inform future research and bring about improvements for patients. Thank you for participating.
I really do appreciate why you posted this survey link, why it might be worth helping, etc.
My issue is very largely to do with the fact that the survey, as it is, would appear to fail to abide by current data protection legislation. That is, any criticism is entirely directed at the people running the survey. Most definitely not criticising you or your posting of it.
The survey does not identify who is running the survey, who is the data controller, who can be contacted regarding privacy concerns.
It does not reassure that data is anonymised so we are left to assume - some of us might jump in the direction of assuming it is all fully anonymised; others will jump towards assuming it isn't. We should not have to make these assumptions. (We might think it is anonymous because it doesn't ask for our names. But aspects of the collected data could reveal things like the ip address where it was filled in. Which could ink to other things.)
It is also only right and proper that the survey tells what will be done with the information collected.
Well I completed it but you’ve gone now 😔
I didn't complete it, partly because of the issues raised by Helvella but also because it demonstrated once again, why people not skilled in compiling questionnaires shouldn't do so.
Thats a shame because GDPR does not apply where personal identifiable data is not collected. The survey is now closed.
ico.org.uk/for-organisation...
That is not quite an accurate reflection of the law according to the link you have posted: "but if you could still identify someone from the details, or by combining it with other information, it will still count as personal data". Irrespective of that, it remains a fact that the questionnaire, or perhaps more accurately, it's compiler, nevertheless makes the common mistakes that are so often evident in such things, and if I have to manipulate my answers ie the facts, to fit the questionnaire, it results in me not doing so.
Mmm, interesting .... as soon as I replied to Crisalice, she left too. Was it the OP in disguise?
She did say:
I've closed one account and will be closing this account on HU after that post. I appreciate that more information could have been put up but the fact that it was so forcefully put down has made me want to leave this thyroid community.
I am sorry anyone feels that they have to leave.
I see it as one of the duties of the administrators to attempt to protect members, if they see things that require it. Hence, removing email addresses, personal details, etc. when posted. And trying to ensure no spam.
My action here was to identify an issue and post about it. My next action was to contact the BTF to question their approach to surveys (no response yet, not that I would have expected one in such a short time).
I hope the BTF considers my questions and points and ensures future surveys are totally clear in every way.
No, I did not complain about the design and structure - I didn't get past the first page!
Having first worked my way through it, testing it out with made up answers so that I could move from one page to the next, I had decided not to bother commenting on my issues with the design and structure, and wouldn't have done so if others' concerns hadn't also been raised in the thread. Whilst I understand why they might prevent respondents from moving to the next page until all questions have been answered, there are better ways of dealing with missed answers without preventing someone wanting to first read through the whole set of questions to see where it was going, before troubling to answer. So it got my hackles up from the get go. My first career was in social housing, and social landlords are obligated to create tenant surveys ad flipping nauseum, so I'm not unfamiliar with the pitfalls; but the whole approach of BTF in presenting this one has been distinctly cavalier, and it's good that you've been in touch with them to raise your own questions and points.
Think I'm glad I missed this! I do like to read at least something every day but isn't the fact I didn't on the day in question a problem with it for a start? Surely if you are doing this there should be more than one ocassion that this is mentioned to hopefully get a more balanced view?
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