• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

Participants for Study Recquired

jacq@diabetesexpert

jacq@diabetesexpert

Member
Messages
10
Type of diabetes
Type 1
Treatment type
Pump
Hi Everyone, I’m Jacq, you might have seen me around the forums or know me from the work I do with the NHS on behalf of Diabetics, or with DWED I’m doing some research on how to use a new online platform to help people with type 2 Diabetes and I was looking for participants for a pilot study. As part of the study you will get to chat to Diabetes Experts Online, free of charge and anonymously. It is designed to help you get much better control and generally feel much better about your Diabetes regime (or lack of it in my case ha ha) You can sign up for the trial herehttp://diabetesexpertsonline.wordpress.com/ where you can also get much more information about what the trial entails. We expect there to be quite high demand so participants will be randomly selected. Ta everyone (and good sugars for the week)
 
Is the new site one that people would eventually have to pay to use?
 
Will your experts be giving the same advice as the NHS on, for example, diet?
 
well the idea is that is more like a discussion between the participants and the expert so it's more like what you really want to ask your specialists in appointments but never really get the chance to like for example what are the pros and cons of going low carb, so I imagine that everyone will have different questions and that way the discussions will be a bit more interesting than an NHS appointment. I can't speak for our clinicians however
 
Sorry, totally off topic but every time I see your forum name I just see sexpert for some reason lol :-)
Can you give us some more info regarding future funding as I'm concerned this may end up as a business venture and there will be costs involved to the patients ?

Sent from the Diabetes Forum App
 
Hey - Glad I look like a sexpert lol. So basically Adeo is a social enterprise that I set up with some friends as I noticed that there was a lot of commissioning in Diabetes at the moment looking at 'technical innovation'. I am always in these meetings as I founded the UK registered charity Diabetics with Eating Disorders I have developed an online platform for the phd I am currently undertaking at Birkbek, University of London, looking at psychological risk and protective factors in blood sugar fluctuations in type 1 diabetes and cost effective interventions. My other half works for a Type 1 app and they are heavily involved with CCGs of some NHS trusts in London (they are currently working with St Georges and Great Ormond Street) and we are pretty much following the same model whereby the NHS commissions the service for their patients similar to DAFNE or DESMOND which is what we are ideally going for. I am currently talking to Kings health partners about getting full commissioning but like I said the goal is DAFNE. However we need a pilot study to prove effectiveness and that is what I am advertising here. Also the reason that I wanted to do this was that as a social enterprise any profit we do make has to be put back into other socially benefical projects, DWED made 7K last year and that's simply not enough to run effectively.
 
Jacq,
Whilst you're here can I ask if people can actually still get some support from DWED? I've referred a few people to the site recently but wasn't really sure if they would be able to get active help.
 
From reading this forum. The real experts are diabetics themselves, people are unique to their condition. Advice is there for everyone, so if something doesn't work, then there is always other ways to try.

Instead of diabetics listening to advice, it will be refreshing for the experts listen to diabetics on how they control their conditions and on how successful they are, through reducing medications eventually weaning themselves off, all together. This is where the real research is. Real people, in real time.
Also it would be great, that the current advice on diet, could be re evaluated, since the change, there has been an increase of cardiovascular disease, obesity and of course diabetes. At the end of the day, the amount of carbohydrates recommended, is far to much.
It would be great, if experts were more proactive to advice Government, and food industry, that food products is dangerous to health. As there is so much salt, sugar of multiple types.. Amongst other ingredients. Unfortunately the damaged has been done with the use of hydrogenated products.
 
phoenix said:
Jacq,
Whilst you're here can I ask if people can actually still get some support from DWED? I've referred a few people to the site recently but wasn't really sure if they would be able to get active help.
Click to expand...

We are really really struggling at the moment so we do advise anyone coming to us to use our forums but no, I do not support anyone 1 - 1 anymore, it was fine when there were only 20 members but as you can imagine we got pretty big memberwise while actually losing money so the 1 - 1 support is not available at present. We did just get a bursary from the helplines partnership though so I am hoping that we will be able to re open the helpline soon - we just need someone to fund our software. By all means though put them through to the site - they can still download stuff and we do still offer group support on facebook
 
Some of us are probably to bolshy for your lot to handle your experts are l am guessing used to telling not being told and questioned.

Further if so interested inT1 why take time for T2 your explaination doesnt make sense.

What type of experts will you have. l would ask who but guess you may not say yet but what are they experts in..neuropathy diet or what aspect of diabetes...and "a selection" isnt really a great answer l am looking for a tighter defined idea l realise may not be complete.

Will you build it up then dump the T2 side?
 
Also I should say that I have personally hand-picked the experts through knowing them via dwed over the last 6 years and 5 of them actually also have diabetes
 
Mud Island Dweller said:
Some of us are probably to bolshy for your lot to handle your experts are l am guessing used to telling not being told and questioned.

Further if so interested inT1 why take time for T2 your explanation doesn't make sense.

What type of experts will you have. l would ask who but guess you may not say yet but what are they experts in..neuropathy diet or what aspect of diabetes...and "a selection" isnt really a great answer l am looking for a tighter defined idea l realise may not be complete.

Will you build it up then dump the T2 side?
Click to expand...


1) The current programme came out of finding out about the dreadful treatment that my uncle had received after being diagnosed with T2 Diabetes. I then found out that he had no 'right' to see a diabetic consultant in his local authority because he wasn't on insulin, this was around the same time that my friend and business partner wa getting increasingly concerned about her mother's lack of knowledge about her t2. I wanted to do something useful with the platform that I had built, had seen that there was a lot of commissioning for new tech start ups addressing health inequalities and that's why Adeo was born.

2) I'm primarily interested in T1 because I am t1 and have had a long history of problems relating to my illness and the eating disorder that I developed as a result

3) Our experts are a clinical psyhologist who is also diabetic, a sports therapist who is also diabetic, 2 x dsns who are also diabetic, 1 x RN who is also diabetic and a diabetic consultant. I am still looking to recruit a family therapist, and a GP and maybe an extra consultant - also none of them are being paid to do the pilot, neither am I or any of my business partners

As for them not being used to being 'told' I have asked these particular people to be involved because of how much they have listened to me and the patients I represent at DWED so I am confident that they can handle it :)
 
Also I should say that the reason it is a bit vague on the website is to protect the experimental design, so if we say like right we are going to measure you on anxiety then you may see things like response bias in the results and honestly to me (as a researcher and total geek) if it doesn't work then that is just as interesting, that's the whole point of running the pilot, it's to get all these variables to optimum level so it's as effective as it possibly can be. Also the actual titles of the sessions will be released as soon as we've nailed down our clinicians calendars (no mean feat there!)
 
It is a pilot scheme with a difference based on own condition and personal experience, along with others with diabetes.
Refreshing indeed.
 
mo1905 said:
Sorry, totally off topic but every time I see your forum name I just see sexpert for some reason lol :)
Can you give us some more info regarding future funding as I'm concerned this may end up as a business venture and there will be costs involved to the patients ?

Sent from the Diabetes Forum App
Click to expand...
Buwhahahaha! Me too ! I had to look twice :D:D

Signy
 
Back
Top