The IBE Editors Network met at the 27th International Epilepsy Congress in Singapore on 10 July 2007. The meeting, chaired by Robert Cole, was attended by 21 delegates including:
- Mrs Susanne Lund, IBE President
- Dr Vinod Saxena and Dr MM Mehndiratta, India
- Dr Choong Chew Thye, Mr Sherman Goh, Ms Diana Koh and Mrs Grace Tan, Singapore
- Dr José Manual Lopes Lima, Portugal
- Mrs Rose Marie M Espina and Jeanne Desirée D Khonghun, Philippines
- Mr Michael Alexa, Austria
- Dr Carlos Acevedo, Chile
- Dr Shung-lon Lai and Dr Marshal Mo-Song Hsih, Taiwan
- Ms Orla Gilroy, Hong Kong
- Mr Paul Sharkey, Ireland
- Mrs Carol Ireland and Mr Russell Pollard, Australia
- Mrs Ann Little, IBE Executive Director
The meeting opened with the circulation of the minutes from the previous meeting, which had taken place at the time of the 6th Asian & Oceanian Epilepy Congress, in Kuala Lumpur in November 2006.
Delegates to the meeting were invited to present short reports on their national magazine:
- INDIA: Dr Saxena reported on activities in India and stated that their newsletter was a 2,500 copy quarterly joint Society/Association publication. Dr Mehndiratta advised that he is Webmaster of www.epilepsyindia.org and that this site contains information in pdf.
- IRELAND: Paul Sharkey from Brainwave has a team of four people that produce Epilepsy News quarterly, which is a members publication (3,000).
- HONG KONG: Orla Gilroy produces seasonal/quarterly bi-lingual publications in Hong Kong to Neurologists and members. Data can be downloaded from their website in pdf. They also produce childrens books & education packs.
- AUSTRIA: Michael Alexa advised that the Austrian Epilepsy Association only produces an annual publication because of lack of funds. Information is available on their website: www.epilepsie.at.
- PHILIPPINES: Rose Marie M. Espina & Jeanne Desirée D. Khonghun from the Philippines shared that they are a new group (2 years old) and are developing a newsletter.
- SINGAPORE: Grace Tan from Singapore Epilepsy Foundation shared that her group publishes information on their website and communicates via electronic information dissemination. Diana Koh stated that Epilepsy Care Group Singapore produces a bi-monthly newsletter both hard copy and electronic. Their latest website information feature their Dragon Boat team.
- PORTUGAL: Jose Manuel Lopes Lima, President of the Portuguese League, stated that the Portuguese Epilepsy Association was very young and that they intend to produce a newsletter three times per year. Distribution is 5,000 including 500 members for education purposes.
- AUSTRALIA: Robert Coles Association, Epilepsy Association of South Australia and the Northern Territory Inc., produces a quarterly newsletter and stated that publication costs were always an issue and would like to move to more electronic information distribution. Carol Ireland from Epilepsy Action, Australia, produces Epilepsy 360 which is a quarterly newsletter which contains consumer information.
- TAIWAN: Dr Marshal Mo-Sing Hsih from Taiwan indicated that he has been a Regional Sub-Editor of the International Epilepsy News.
- Dr Shung-lon Lai is Chair of the IBE Website Taskforce and advised of the progress made.
- Carlos Acevedo is Editor of the International Epilepsy News, IBE’s newsletter, which is produced quarterly.
The Chair outlined the background to the development of the Editor’s Network, which had been established in 2003 and had first met during the International Epilepsy Congress in Lisbon. The Network was Chaired by Mrs Susanne Lund until her election as IBE President. In 2006 Mr Robert Cole accepted an invitation to take over the role of Chair.
At previous meetings it had been discussed and agreed that the Editors Network would use the IBE Website to:
- Provide an area for Editors to access information from, as a resource to avoid reinventing the wheel.
- Promote and ensure a consistent message internationally eg. promotion of the Global Campaign & Promising Strategies Campaign.
- Consider the development of a photographic library resource and ensure that all ethical and legal issues etc. including patient/client confidentiality are addressed.
It was agreed that Editors Network resource information stored on the IBE website will be in English, since English was the official language of the bureau.
ELECTRONIC VS HARDCOPY PUBLICATIONS
Are costly hard copy newsletters a thing of the past and should we move towards producing them electronically? Detailed discussion took place on moving towards electronic publications ie: email/internet/website newsletters rather than costly printed hard copy.
- Michael Alexa shared details of the practices in Germany, Austria and Switzerland. He indicated that there is a plus for printed publications.
- Dr Mehndiratta shared that in India they support electronic publications because of the cost saving and the fast transmission. Currently they have a slow introduction plan moving to a slow withdrawal over time of their printed newsletter.
- Russell Pollard detailed an emphatic case for printed communication and conveyed that those living with chronic illness often do not have access to electronic information (email/internet) because of costs and availability. He stated that website links make information in other languages available. His Epilepsy Foundation Victoria website provides numerous links to international epilepsy websites.
- The Philippines support print because it is more practical and accessible for their different chapters who live on many different islands.
- Dr Saxena stated that IBE members should continue to use the medium that is the most effective for them.
- Paul Sharkey supported the need to print, otherwise newsletters are not read. Ireland has their newsletter available on their website but it has minimal usage.
AGREED: That hard copy newsletters and publications are not dead and that soft copy versions (email/internet/website) are also useful.
SUMMARY – The Next Steps and The Way Forward
- Agreed that English will be used in the Editors Network IBE website resource.
- Agreed that we all should provide links to other epilepsy websites which will assist local language issues.
- Agreed that both printed and electronic versions of our newsletters are needed.
- Agreed that an Editors Network front page should be created to convey how to use the Editors Network resources.
- Agreed that an Editors Network Photo Library be established.
- Agreed that Protocols be established.
- Agreed that website storage issues must be considered.
- Agreed that a volunteer should be recruited to do the indexing and maintenance of the Editors Network resource area.
Susanne Lund announced that the IBE has been recommended for Special Consultative Status within the United Nations. IBE has been accepted as a NGO (non-government organisation) within the UN Economic & Social Council. This is a monumental achievement. She is currently preparing an article for the IBE Epilepsy News and is happy to make this available to IBE Editors Network Members for publication.
NEXT MEETING (face to face)
It is proposed to hold the next meeting at the 7th Asian & Oceanian Epilepsy Congress 15-18 May 2008 in Xiamen, China. Further details of date, time and place will be communicated closer to the event.