MINUTES OF MEETING
Tuesday 30th June 2009, 3.30pm to 5.00pm, Gallery Building
www.epilepsybudapest2009.org
Chair: Robert Cole
Minutes: Denise Chapman
WELCOME
Meeting commenced: 3.40pm
The Chair welcomed attendees:
- Susanne Lund, IBE President
- Ann Little, IBE Executive Director
- Dr Vinod Saxena, India
- Dr M M Mehndiratta, India
- Dr Christine Walker, Australia
- Denise Chapman, Australia
- Robert Cole, Australia
- Frank Gouveia, New Zealand
- Michael Alexa, Austria
- Paul Sharkey, Ireland
- Peter Murphy, Ireland
- Dr Chew Thye Choong, Singapore
- Grace Tan, Singapore
- Carlos Acevedo, Chile
- Lilia Núñez-Oruzco, Mexico
- Carol DSouza, India
- Beatriz Gonzalez de Castillo, Venezuela
MEMBER REPORTS (around the table)
Paul Sharkey
Brainwave, Ireland produce Epilepsy News 4 times year of 16 to 20 pages and print 2,500 copies and report Brainwave activity, events, personal stories, etc. They have conducted a satisfaction survey and members reported that they are very happy with their newsletter. They have 600 members and forward the newsletter electronically and printed copy.
Dr V Saxena
Epilepsy India provides all its members (27 chapters) with a copy of their newsletters. They produce 2,500 copies with 85% pharma sponsorship and 15% is provided by their Epilepsy Trust sponsorship.
Their newsletter is 24 pages or 32 pages (multiples of 8). These were both emailed and posted. Epilepsy India has been in existence for more than 30 years. IEA is now uploaded to their website www.epilepsyindia.org. Dr Saxena supports the concept of regional sharing of information and to publish appropriate articles. In their last issue of Epilepsy India, he devoted three pages international issues and he is a great believer in following best practice.
One of the main objectives of Indian Epilepsy Association is to help people fight stigma and they have been holding patient meetings since as early as 1982.
Dr M Mehndiratta commented that some members do not wish to receive postal communication due to the stigma attached because it could identify the recipient as having epilepsy.
Dr Choong
Epilepsy Care Group (Singapore) produces an internal bulletin.
She raised a question regarding permission for publishing photos.
Robert Cole advised that in Australia, they got a general waiver signed before any events to avoid any later issues. He described the issues with photographing Wards of the State
Paul Sharkey detailed that Brainwave make an announcement at meetings etc. that photos will be taken and ask for general permission
Carlos Acevedo confirmed that he always obtains full consent to avoid creating any future problems
Ann Little stated that the IBE and the ILAE obtain full permission at all congresses via a permission opt out tick box on the registration form. The IBE annual dues form also contained an opt out tick box to allow the use of photos submitted by members.
Carol DSouza detailed that her members and support group are really out of the shadows and it is not an issue
Frank Gouveia
New Zealand produces a newsletter. They have 17 branches operated by volunteers. They have developed a new business plan and are considering producing a national newsletter.
Michael Alexa
Michael advised that Austria produces a newsletter once a year. It does not contain any international news because there is always an issue of space.
Carlos Acevedo
He advised that Chile produced a newsletter of 40 pages via 50% pharma support. It target patients and has no medical practitioners input and 5,000-6,000 copies are produced and delivered personally to all doctors consulting rooms who treat patients with epilepsy.
Their newsletter is free and details a special theme each issue: ie women, children, school etc. and provides first aid every issue.
Lilia Núñez-Oruzco
Mexico has a website to inform lay people about epilepsy. Publications are a core feature of their website. Hard copies are given to patients and families.
They also provide a special website section for consultations and operate a chat room. The website is the most visited website in Spanish and has videos, etc. They update the website often: www.epilepsiahoy.com
Denise Chapman
Denise Chapman detailed the publication of The Epilepsy Report. This is a national magazine produced by Epilepsy Australia which is a coalition of Epilepsy Associations from around Australia.
This magazine is also circulated internationally with a distribution is 10,000. A peer review section is planned for 2010. www.epilepsyaustralia.net
Susanne Lund
Susanne Lund reported that The Swedish Epilepsy Association produces a 24 page national magazine which is distributed to 8,000 members quarterly. It is distributed to members, subscribers, and parliamentary members.
Robert Cole
He reported that The Epilepsy Centre published their newsletter quarterly in full colour and the circulation is broad including international colleagues.
He commented that the electronic age is very exciting and a great way to mass communicate.
IBE WEBSITE DEVELOPMENT
www.ibe-epilepsy.org
Ann Little advised that the new IBE website is working well and that more information is needed on the regional pages. The newly improved Editors Network pages now contain some uploaded articles.
Articles from other members of the network are needed to build the resource. A suggestion was made as to whether the Member posters could be uploaded to website. Ann will investigate the possibility.
Robert Cole advised that the first uploaded article, Alcohol and Epilepsy was a pdf that can be copied and pasted. Others have since been added. Please review via the link: http://www.ibe-epilepsy.org/networks/alcohol-and-epilepsy
Members are strongly encouraged to add articles by forwarding them to Vânia Silva for uploading.
SUBMITTING ARTICLES & UPLOADING PICS TO FTP SITE
The use of a File Transfer Protocol (FTP) separate site was widely discussed. The IBE IEC currently uses such a site to house its IEC papers and members access it.
Robert Cole suggested adding another FPT site for the Editors Network. Several issues arose and there is a need for a common password. After long discussion the consensus was to stay with what we have.
Members are requested to send information/articles etc to Ann Little or Vânia Silva for uploading to the Editors Network webpage. These can be in any format. Access to the Editors Network is available through the link to Networks, which can be found towards the bottom of the right hand column on the Homepage.
Debate over last three meetings canvassed the issue of producing and supplying electronic newsletters only, versus hard copy. Evidence and feedback strongly suggested that both were needed.
Vinod Saxena tabled a very interesting article form Time Magazine, March 2, 2009, titled How to Save Your Newspaper written by Walter Isaacson. The article will be forwarded separately and focuses on people moving away from paper because people dont want to pay. Conventional wisdom that we like to handle what we read which is supported by this article.
IE NEWS REGIONAL SUB-EDITORS
&
SOURCING CONTENT FOR IE NEWS
Carlos Acevedo presented the idea of sub-editors for International Epilepsy News. The thinking is that they will be able to provide him with more information from the chapters.
The chairs of various regional committees will collect information and stories, review, edit, and make some classification for IBE IE News.
Vice Presidents and Chairs of Regional Executive Committees will lead the concept of sending information and stories to IBE IE News.
There is a need to publish stories from all over the world that have an interest to the IE News international audience. Personal stories are also needed and it will be the responsibility of the regions to collate and submit information.
The need for information in other languages was also widely discussed again. English is the language that the IBE website is published in.
It would be an impossible task to translate articles into other languages and store them. However, the Editors Network recognises the need and suggestions were made about solving the issue. Modern IT software is available that does translations that are quite accurate. The technology is available and being used widely.
ANY OTHER BUSINESS
The need for a Search Engine within the Editors Network section was raised. The IBE website has one but it was recognised that an archival system may be needed in the future.
NEXT MEETING (face to face)
The next face to face meeting will be held at the 8th Asian & Oceanian Epilepsy Congress, Melbourne, Australia, 21-24 Oct. 2010
http://www.epilepsymelbourne2010.org
There was no other business and the meeting closed at 5.00 pm.