New Survey Study for People with T1DM!

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Rujiravee

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Hi!

I am a PhD researcher at the University of Manchester. We are running several research projects to help improve the quality of life for people with T1DM.

We just released a questionnaire survey that will take less than 20 minutes to complete. You will be compensated for your time with a £10 Love2Shop e-voucher (UK only).

Your opinion is valuable to us!

Interested? Please follow this link:
tinyurl.com/UOMT1D

Thank you for considering this opportunity.

Study 2 poster.png

This has been approved by @Anna DUK . This study is not affiliated with Diabetes UK.
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Has this survey been approved by forum admin?
 
rebrascora said:
Has this survey been approved by forum admin?
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Hi, thank you for your message.
Yes this post has been approved by the admin already. I also included the statement
'This has been approved by @Anna DUK . This study is not affiliated with Diabetes UK.'
at the end of the post.

Thank you
Vee.
 
I couldn't possibly have that range of readings all at exactly the same time, and without knowing what's happened before that, eg what time did the person wake up, whether she's eaten any breakfast if so what and did she bolus if so what, what insulin(s) they use and what else is wrong with them and they take drugs for. I had to 'tick' to say I'd had the opportunity to ask any questions before I could see the questions. I appreciate these Qs have had ethics approval and all that malarkey - but without knowing EXACTLY what the research is trying to find out and solve - it was very difficult to wholly engage with it to be honest.

Of course, I do speak as a person with 50+ years experience of trying to impersonate a pancreas who is also completely comfortable with FP testing, jabbing myself, adjusting my own rates on pump, basal testing, carb counting etc etc.
 
trophywench said:
I couldn't possibly have that range of readings all at exactly the same time, and without knowing what's happened before that, eg what time did the person wake up, whether she's eaten any breakfast if so what and did she bolus if so what, what insulin(s) they use and what else is wrong with them and they take drugs for. I had to 'tick' to say I'd had the opportunity to ask any questions before I could see the questions. I appreciate these Qs have had ethics approval and all that malarkey - but without knowing EXACTLY what the research is trying to find out and solve - it was very difficult to wholly engage with it to be honest.

Of course, I do speak as a person with 50+ years experience of trying to impersonate a pancreas who is also completely comfortable with FP testing, jabbing myself, adjusting my own rates on pump, basal testing, carb counting etc etc.
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Dear Jenny,

Thank you for your message. We really appreciate it.

We understand your concern. We initially discussed this matter with our team as well. I would like to inform you that the design of the survey is intentional. We created the questions to accept open-ended responses that allow participants to add their context to their responses, for example, a person who just woke up, had a meal before, etc., along with their choice of corresponding actions.

Our main goal is to assess the quality of the visualisations to further improve the blood glucose monitoring system for people with T1DM. Therefore, there is no right or wrong answer. We are more than happy to take any responses from participants regardless of their lifestyle.

If you experience any difficulties while responding to the survey, please do not hesitate to let me know.

Thank you again for your interest in our study.

Best regards,
Vee.
 
I had similar thoughts to @trophywench.
Hopefully, I articulated this in my answers which were more than take x carbs or y insulin.
I fear restricting visualisations and messages to purely BG risks people diagnosed more recently (although compared to TW, I am a newbie with only 20 years under my belt) as lacking knowledge about themselves and their diabetes and depending too much on technology which may fail.
Maybe the “tips” you are proposing could drive the person with T1D to think about these things. This could then be more educational than reactive.
 
Done! The main problem I find with a machine trying to suggest things to me, is that it doesn’t know what i’ve just done. eg, the sudden drop, If I knew I’d just taken a load of bolus by mistake for my basal, I’d know why it was dropping, and the machine couldn’t know that, so it would have to give me a list of every possible scenario!
 
What sort of shop is Live2Shop? I don't want a voucher I find I cannot spend. One survey company sent me a £25 one which I never used as the offerings were online tat
 
MikeyBikey said:
What sort of shop is Live2Shop? I don't want a voucher I find I cannot spend. One survey company sent me a £25 one which I never used as the offerings were online tat
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I assume it is Love2shop which Google found very easily https://www.love2shop.co.uk/
But I don’t intend to take it. It is not my motivation for supporting these types of research, especially as it costs me nothing and only takes a few minutes.
 
Bruce Stephens said:
Judging by the website I think that's a sensible choice. My guess is the £10 gifts were given freely by the company; I doubt they're getting many customers in other ways.
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Can’t you use the gift card in a range of well known high street shops? My daughter got a card for signing up to a certain internet provider (several years ago now, but the list of shops is still the same if you google it) and spent it in M&S. I think the point is, you can’t use them online, you have to go into an actual shop.
 
helli said:
I assume it is Love2shop which Google found very easily https://www.love2shop.co.uk/
But I don’t intend to take it. It is not my motivation for supporting these types of research, especially as it costs me nothing and only takes a few minutes.
Click to expand...

Actually I am not bolthered about the gift card more a case of railing against universities in general. My old university asks alumni for money for students yet the VC is paid signifyingly more than the PM is, have put up a lot of new expensive buildings, pay senior lecturers pretty hefty salaries, etc. yet want to raise tuition fees when half the degrees lead nowhere! Just me having a rant!
 
Done!
Yes, I too found it interesting. I think many members of this forum are sufficiently clued up about their diabetes and the ways in which CGM can exaggerate or create erroneous results, to not need any on screen prompts, but I am not sure we are exactly representative of the general population of Type 1s. Certainly many people coming to the forum do not know about compression lows or the algorithm over egging things sometimes 🙄

I think the prompt screens could be helpful for many people although I had great difficulty reading the small print even on a desk top and it needs to be said that there are quite a few diabetics who are visually challenged often as a result of the condition.
 
rebrascora said:
Done!
Yes, I too found it interesting. I think many members of this forum are sufficiently clued up about their diabetes and the ways in which CGM can exaggerate or create erroneous results, to not need any on screen prompts, but I am not sure we are exactly representative of the general population of Type 1s. Certainly many people coming to the forum do not know about compression lows or the algorithm over egging things sometimes 🙄

I think the prompt screens could be helpful for many people although I had great difficulty reading the small print even on a desk top and it needs to be said that there are quite a few diabetics who are visually challenged often as a result of the condition.
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Exactly - All of my "lows" are compression lows and I've not had to treat any of them on my graph below (apart from the daytime ones) - It does definitely over exaggerate things, which is not a bad thing if you have diminished hypo-awareness - I don't though and the alarms are very annoying at 4am!!
1727906462993.png
 
Completed.
The treatment bit is interesting ad other have mentioned so many of the answers are "it depends". That screen on its own without the history and future of that persons day/week is a bit of average what would the general advice be, rather than what I would do. I never treat a 10 - 11, even 12, I might leave it. Or I might glug a load of water (if I have access to a loo) or get in some quick steps or exercise (again if i could). Intertesting idea with the info on the screens, espaiclly for new T1's and if optional / could be tailored. I quite like the general "treat the low / high" my pod has now, it it saying do something, but the what 'I know best.
 
I took it very much as suggested. If that was my graph at that point in time, what are the things I would consider in my circumstances..... Or maybe it might be easier to approach it from the view that we are trying to help problem solve for someone here on the forum and look at each graph and list all the things we might consider when we saw that result/graph, but don't know all the info behind it, like how much was eaten and when and how much insulin was injected and when.
 
helli said:
I had similar thoughts to @trophywench.
Hopefully, I articulated this in my answers which were more than take x carbs or y insulin.
I fear restricting visualisations and messages to purely BG risks people diagnosed more recently (although compared to TW, I am a newbie with only 20 years under my belt) as lacking knowledge about themselves and their diabetes and depending too much on technology which may fail.
Maybe the “tips” you are proposing could drive the person with T1D to think about these things. This could then be more educational than reactive.
Click to expand...
Hi,

Thank you for your comment and contribution to this survey.
We would like to assure you that the responses we received from participants will be systematically processed. The findings of this study will be used to minimise the burden of blood glucose data interpretation for people with T1DM.

Moreover, we are planning to run more diabetes-related research projects in our group with the main aim of helping improve the quality of life of people with T1DM. If you are interested in participating in our upcoming projects or have any questions, please feel free to email us at diabetes@manchester.ac.uk

Best regards,
Vee
 
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