Formation of DAFNE Graduate Group (DGG)

I received an email today telling me that "As of 1 May 2014 DUG will cease to exist. Attached is a letter sent on behalf of DUAG which explains their decision and recommendations moving forward."

I didn't see any explanation or recommendations in the attachment
It listed a bunch of benefits of the combined membership but I couldn't see anything that wasn't already available.

Could someone explain to me what is actually happening here?
All I see is I'm being "bribed" with the possibility of a bottle of champagne if I allow the new group to email me occassionally.

thanks,
David

I got that email too.

First page of the PDF:

Dear DAFNE User Group Member,

Formation of DAFNE Graduate Group (DGG)

We are writing to you, via Central DAFNE, to inform you that the members of the DAFNE User Group (DUG) and eligible DAFNE Online users are joining together to form the DAFNE Graduate Group. Membership is open to all existing DUG members and all DAFNE Online users who: Are DAFNE Graduates who attended a DAFNE course in the UK or Republic of Ireland Agree to accept occasional communication by e-mail from the DAFNE User Action Group (DUAG).

Benefits of the combined membership for all members will be:

Access to DAFNE Online Apps for iPhone & Android devices

Access to DAFNE Online Forums to discuss questions, issues or topics of interest to other users

Ability to ask questions direct to Health Care Professionals both in your own DAFNE centre and through a specific forum

Information updates from DUAG through a regular newsletter and specific updates e.g. on announcements made at the annual DAFNE Collaborative

Opportunity to get more involved in running the DAFNE programme in the UK & Republic of Ireland

On-line access to the DAFNE workbook and information on changes made during updates

Briefings on the latest DAFNE research and its impact on the DAFNE programme

Interaction with a social network of nearly 9,000 DAFNE Graduates and a total of nearly 14,000 users with an interest in DAFNE plus the ability to directly interact with other users from your own DAFNE centre

The e-mail communication from DUAG will include a newsletter produced every 3-6 months and occasional other requests (e.g. for feedback on initiatives being run by DUAG or for patient input on focus points for DUAG or questions being considered by the DAFNE Executive). We will not swamp your e-mail inbox and DUAG commit not to share your e-mail address with any other party, including Central DAFNE.

Hi davidcragg and JayBee, Rather belatedly I'll try and address your questions. For a number of years dafneonline and the DAFNE User Group (DUG) were run a separate organisations, with separate memberships although in many ways they were trying to contact the same people - DAFNE Graduates. Earlier this year we decided that it would make more sense to have a single membership (hosted by dafenonline) through which DGG members could be contacted elctronically (whereas with DUG only postal contact details were held). However, we are acutely aware that the last thing many dafneonline users would want would be to start receiving unrequested communication by e-mail. Hence the request to opt in to receive communication from the DAFNE User Action Group (DUAG), of which I am the chairman.

You are correct that for existing members of dafneonline there is not a significant difference in the benefits of the combined membership, but for members of DUG significant change has been introduced both in terms of the information available, and the means of accessing it.

Unfortunately for JayBee this doesn't mean any change to the existing Android app which doesn't have anyone committed to keeping it updated in the same way that Simon does for the iOS version. I also use it, so know where you're coming from.

Finally yes we are doing what we can to get patients and Health Care Professionals (HCPs) talking. There was a presentation given at the last DAFNE Collaborative meeting on dafneonline to try and overcome some the difficulties faced by some HCPs. However, the biggest challenge is that some hospitals instruct their staff not to communicate with patients on-line as there are worries that insurance won't cover such discussions. It therefore seems to be up to the individual HCP professional to decide whether they will become involved, and to what level. It also has to be remembered that most contribution is being made outside working hours so that limits the likely involvement. Failing all else, you can always post a message on the Questions to HCPs forum where there are several HCPs who do respond.

Hope that helps. Let me know if you have any other questions.

Apologies, I may have only just seen this...

Is it possible for a member to attend any of the annual meetings that have minutes posted on dafne.uk.com? I didn't think to ask before now because I trusted my hospital to not let me down, but now they have, I am interested even more in supporting.

I wonder what could be done to change the insurance arrangements so that it is okay for HCPs to participate... I suppose a network of DAFNE trained DSN doing weekly or monthly video conference things would be too difficult to put in place...

Hi, I can comment on this now that I have no involvement in DUAG, DGG or anything but DAFNEOnline ;-) Sadly no you can't go to the meeting unless invited. Peter may be able to help with that but I am not overly optimistic, even when I was presenting a session there I had trouble getting invited ! I should make clear this is nothing to do with the Medical Professionals who could not be more welcoming, supportive and helpful. Its the DAFNE administrators who don't quite grasp patient participation, one of the reasons I am no longer involved. I would approach Peter direct or I still know 'people' if that fails. Its held in Manchester , usually in June/July and is a very interesting day. The thing with the HCP's participation and insurance is still an issue but there are constant efforts going on to try to change this and some enlightened people. One day they will overcome the bureaucrats in the NHS and provide a 21st Century service that makes use of technology. There is a new trail of DAFNE called DAFNEPlus that will hopefully implement some of this in the next few years. The HCP's are aware of what's needed its being allowed to do it.

I am in contact with Peter regarding my hospital situation so I will probably speak to him directly first.

I look forward to learning more about DAFNE Plus. Will notes for it go up on this site? Will forum members need a new code to access them if yes?

Thanks for your replies Marke.

I would have to get permission to put notes on the site for DAFNEPlus I will find out and get back to you. There will be no new code as any DAFNEplus site will be separate from this site because its a trial they need to keep it separate from this site which has a large membership of DAFNE grads that have already done the course. To provide the new course is better than can't contaminate it with existing grads while the trial is ongoing.....

Fair enough. That makes sense.

I would be interested in patient participation if location isn't a barrier and what not.

I look forward to the update about it. Needed some good news after all the upsetting news of late.