Important DAFNE question

All, Simon and I are going to be doing a workshop on DAFNE Online at this years DAFNE Collaborative ( a conference for all DAFNE Educators). As part of it
we want to find out about HCP contributions to the site and the barriers for doing so. Related to this we agreed we would run a little survey to get your opinions so
that we can present these to the educators that come to the workshop. So as many answers as possible please


Does your HCP use DAFNE Online ?

Do you think HCP's should be involved in/contribute to DAFNE Online or should it graduate led ?

What other apps / social media do you use / find useful with relation to your Diabetes ?

Hi Marke,

1) No - DAFNE isn't as well known in Australia as in the UK.

2) I like it a lot as it is. Occasionally, it would be nice to have more HCP input, but the forums seem to cope well without too much.

3) DAFNE is pretty much it for me. I read books about T1D too, but for the most part, just stick to DAFNE.

Thanks,
Warwick.

Hi Marke

1) I don't think any HCPs from my centre are active on DAFNE on-line. Generally I've found that HCPs are prevented by their trusts from communicating with patients by e mail because of fears (unfounded in my view) about patient confidentiality, and perhaps this extends to any form of electronic communication.
2) I would like to see more HCP involvement - it can only enrich the forums.
3) I use the carbs and cals app for iPhone a lot. I find the Diabetes UK email newsletter quite interesting, but that's about it for me.

Stew

Hi Marke,

1) dont know about HCPs using it from my centre
2) would like to see more HCP involvement
I use carbsandcals app, and myfitnesspal app. I am on 2 facebook groups for users of Omnipod (both in UK and US).

1 - As far as I am aware, none of the HCP's from where I did my Dafne course are online or use this site - As another poster here said, I suspect that this is due to fears of patient confidentiality - unfortunately for the NHS (UK based) the world has moved on from the way things were done in the 1950's and it is about time they caught up. It may also be due to fears that if a HCP gives some advice, then they may be sued for giving out wrong advice, or it conflicts with other advice given by HCP's from other parts of the UK (with more or less money in the pot), or indeed other HCP's from other parts of the world - as other countries do things slightly differently. However, I have now moved to a different part of the UK, and am no longer in touch with those HCP's - However, my current GP surgery - Berks - is so backward and refusing to join the modern world, I would be surprised they even knew of this site (actually I know they do, as they promote Dafne, but refuse to consider pumps, let alone modern pumps with CGM, and they hate it when I say all my results are online, I can share them with you)

2 - Yes I would like much more HCP participation - most of us are capable and adult enough to read on here - and elsewhere on the web and work out whether a particular scenario applies to us or not - and if the patient is seeking and asking for advice - on a semi public forum, then by doing so surely the patient themselves have said - look here is my problem, I don't mind that others can read - I want them to read, as I value the advice that may come back.

3 - I use the carbsandcals app, as well as this one, and belong to a FB group - and whilst I don't contribute much on the FB of here, I do read the forums on here - and take what I need.

Sorry to waffle on, many thanks, keep up the good work.

1) I'm not aware that my HCP uses DAFNE online.

2) I rarely see any responses from HCPs. More HCP involvement would certainly be welcome. I have just scanned the first ten topics in the 'Questions for HCPs' forum and I haven't seen any HCP responses. It's a good job we have some very smart Graduate contributors, like Warwick, Novorapidboi and a few others, who offer sound advice to lots of questions.

3) I don't have a smart phone, so APPs don't APPeal to me.

Does your HCP use DAFNE Online ?

I think one of them does but not often

Do you think HCP's should be involved in/contribute to DAFNE Online or should it graduate led ?

It is very important to get a HCP perspective on things, and also from their side for them to understand what we do day-to-day. We only get to see HCPs for brief appointments, so the risk is we don't understand each other. This leads to them suggesting actions or treatments which might be inappropriate for us as individuals, and us not understanding why they suggest things or how to explain. It leads to entrenchment and separation between the HCPs and diabetics, when we should all be working together as a team.

The HCP hour on the DAFNE course was helpful as it allowed us to speak to the doctor as a person, without rushing or being constrained by the tick-box approach of a normal appointment. We could ask them anything and they would give their reply and explain why.

What other apps / social media do you use / find useful with relation to your Diabetes ?

Apps: the DAFNE one obviously. Mysugr is great, I love the presentation of it. and Carbs and Cals which is vital due to the images of portion size which can be hard to judge with a text-based resource like the DAFNE handbook - who knows what 100g of something looks like?

Social: diabetessupport website and a US based one called Daily Strength.