Being Excluded from Type 2 Research

minidvr · Sep 11, 2015

A week or so ago, I was invited via my GP to become part of a T2 research program being run through a Contractor for the NHS in Bexley.

Having responded, the questionaire asked questions about last HbA1c status and other diseases or afflictions. I waited for developments.

I got a phone call yesterday, which initially seemed to say that I was suitable for the research, but when asked about my normal BG levels, which vary between 4.8 and 5.8 and an occasional 6+, they said that I wasn't suitable for the research, as the research was designed to reach those with averages above 7?

I can't understand why research for T2 is confined to such a narrow spectrum. And of course disappointed that having responded in good faith, to be turned down in quite a brusque phone call. They asked if they could retain my medical data and I said no. As they have no right to use it in their research, if I'm not going to be part of the study.

Is this common?

Why isn't T2 research targeted to a wider spectrum of T2 sufferers?

I'm still grumpy this morning.

dawnmc · Sep 11, 2015

To be fair Minidvr, your levels seem 'normal' for a diabetic, and I think they are hoping to reach people who aren't controlling their diabetes as well as you seem to be. So stop stressing it will put your levels up lol.

ButtterflyLady · Sep 11, 2015

This particular research project is targeted at those with an average of 7 or higher; not all diabetes research is necessarily designed this way. It's common for a GP to invite someone to participate in research and then to find out you don't meet the criteria. It's not just you.

lizdeluz · Sep 13, 2015

Well done for doing so well with your diabetes management.

It's their telephone manner that needs to improve!

AndBreathe · Sep 13, 2015

minidvr said:
A week or so ago, I was invited via my GP to become part of a T2 research program being run through a Contractor for the NHS in Bexley.

Having responded, the questionaire asked questions about last HbA1c status and other diseases or afflictions. I waited for developments.

I got a phone call yesterday, which initially seemed to say that I was suitable for the research, but when asked about my normal BG levels, which vary between 4.8 and 5.8 and an occasional 6+, they said that I wasn't suitable for the research, as the research was designed to reach those with averages above 7?

I can't understand why research for T2 is confined to such a narrow spectrum. And of course disappointed that having responded in good faith, to be turned down in quite a brusque phone call. They asked if they could retain my medical data and I said no. As they have no right to use it in their research, if I'm not going to be part of the study.

Is this common?

Why isn't T2 research targeted to a wider spectrum of T2 sufferers?

I'm still grumpy this morning.

Well done on getting your levels well under control, but I do empathise with the researchers, and depending on the details of the study, if it were me, I would probably reject you too. In reality, what does a subject like you actually achieve? At best, a marginal improvement, but whilst marginal improvements are desired, in terms of efficacy of whatever regime the project involves, a change of 1% or 2% or whatever, is no real quantum shift. With subjects out of desired range, improvements are easier to see.

I think the real, hard facts of such research is that it is being done for the greater good/bigger picture, rather than the individual study participants. Improvements to the individuals are almost collateral benefits. I know that sounds harsh, but research isn't done to improve the lives of 10 or 20 people, but to impact on a wider population, if successful.

As a matter of interest, what sort of research is involved? I appreciate you may not be able to say if you are subject to a pre-signed confidentiality agreement.

minidvr · Sep 13, 2015

AndBreathe said:
Well done on getting your levels well under control, but I do empathise with the researchers, and depending on the details of the study, if it were me, I would probably reject you too. In reality, what does a subject like you actually achieve? At best, a marginal improvement, but whilst marginal improvements are desired, in terms of efficacy of whatever regime the project involves, a change of 1% or 2% or whatever, is no real quantum shift. With subjects out of desired range, improvements are easier to see.

I think the real, hard facts of such research is that it is being done for the greater good/bigger picture, rather than the individual study participants. Improvements to the individuals are almost collateral benefits. I know that sounds harsh, but research isn't done to improve the lives of 10 or 20 people, but to impact on a wider population, if successful

As a matter of interest, what sort of research is involved? I appreciate you may not be able to say if you are subject to a pre-signed confidentiality agreement.

Thanks for the responses. I didn't agree to any sort of confidentiality, as we didn't progress to that stage.

The didn't actually describe what the research entailed, just that it was investigating how people managed their diabetes, perhaps some sort of comparison of the different models. I have been using the LCHF diet for about 18 months and my sample BG test yesterday was at 4.2, down from 4.8 on the previous test. I have lost over 2 stone in weight and am exercising by walking, playing table tennis regularly - which given my age, is more than enough for me at the moment.

These BG levels are well within the normal spectrum as far as I can see, but my GP refuses to take me off medication. (Metformin). I don't know whether a reduction in intake would benefit me or not, but would like to try non-medication options, given the chance.

donnellysdogs · Sep 13, 2015

Frustrating that nobody wants to research how a good controlled diabetic achieves it!!

Thats what I've found frustrating for 30+ years...

In end I just had to accept that they have to approach research from a negative to find a positive..find a positive, healthy diabetic is the minority so nobody is really going to make money from finding new drugs.... I've not got complications so thats another positive... They have to find the negatives as far as I'm concerned and try to find drugs or machines etc to help... When we are good esp T2's they can't ply you with trial drugs to reduce your levels because you've got them good by your own method...

ButtterflyLady · Sep 14, 2015

minidvr said:
Thanks for the responses. I didn't agree to any sort of confidentiality, as we didn't progress to that stage.

The didn't actually describe what the research entailed, just that it was investigating how people managed their diabetes, perhaps some sort of comparison of the different models. I have been using the LCHF diet for about 18 months and my sample BG test yesterday was at 4.2, down from 4.8 on the previous test. I have lost over 2 stone in weight and am exercising by walking, playing table tennis regularly - which given my age, is more than enough for me at the moment.

These BG levels are well within the normal spectrum as far as I can see, but my GP refuses to take me off medication. (Metformin). I don't know whether a reduction in intake would benefit me or not, but would like to try non-medication options, given the chance.

If you want to come off metformin just tell your doctor this. It's important to let them know rather than stop it on your own. He or she may want to give you some info that will help as you do this.

However, it can be a good idea to stay on it. My HbA1c is 33 and I happily stay on it because it has several benefits.

Being Excluded from Type 2 Research

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