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Report from the Bone and Joint Decade Annual World Network Conference in Berlin, Germany, October 30 – November 2, 2003
Author: Ben Horgan, Australian National Action Network Consumer Representative, International Ambassador Bone and Joint Decade 2000–2010
The meeting officially started for me during the patient organisation meeting over which time about 24 patient representatives and consumer group representatives assembled to become better acquainted with each other. Most of this time was taken up with each representative introducing himself or herself and giving a very brief rundown on what they have been working on within their own organisation. Some of the achievements to date were exceptional and the plans for the future indicated to us all the willingness of consumers and their organisations to make a real difference during the Bone and Joint Decade. Considering the amount of information we all had to contribute it would have been better to have a whole day together.
We were also updated on communication initiatives being developed by the International Steering Committee. Portals are being developed where by lectures and conferences can be viewed via the internet in real time. This technology is being developed in conjunction with the BJD and gives us an excellent tool for communicating to the world and empowering organisations and individuals with information to help them move forward in their strategies. The only concern would be that it is available to all who would find use in its contents. It is currently password restricted which is necessary but we must ensure that passwords are easily available to both professional organisations and patient representative groups alike.
On the first night we were shuttled to the very impressive Daimler-Chrysler Building where the official Opening ceremony took place. The German Minister for Health gave an interesting speech, as well as Lars Lidgren, Chairman of the BJD International Steering Committee.
Unfortunately there was nobody speaking who truly represented patient organisations. Of the speakers that were presenting on the night, nobody mentioned partnerships including Consumer Groups or Patient representatives. This was terribly disappointing. We then walked to the center of town where we witnessed the start of the Nordic Walk, which was supported by the Bone and Joint Decade. It was similar to a walkathon but participants were dressed like they were skiing and even had the ski poles to match. The only thing missing was the snow. It was a fantastic idea and certainly raised a lot of awareness for the BJD as there were thousands of participants. This is an idea we can work on here in Australia. We don’t necessarily need to initiate an new event. We could however get involved in an existing event such as the Sydney City to Surf or the Perth Bridge to Bridge.
The next morning was the official start of proceedings. Professor Peter Brooks started proceedings with an update of his work with the World Health Organisation. His plan involved working with WHO to enable Arthritis and Musculoskeletal conditions to be included as a WHO priority. Peter, was followed by members from the WHO, who outlined the work of their organisation so far during the decade and their role for the future. Professor James Waddell from the Canadian Arthritis Body then gave us an overview of how they have produced a fantastic framework whereby university research, government organisations and industry all work together with consumer groups to form the ultimate coalition.
The morning session then took on a more consumer-orientated approach. We heard about initiatives undertaken in the Middle East to try and improve road safety. This is certainly an area where world wide we can make a real difference with the benefits to last well after the decade has concluded. We then heard from the CEO of the Arthritis and Rheumatism International who explained the role of a truly international Consumer group that not only helps to promote the effectiveness of Consumer groups worldwide but helps fund raise for these groups as well. I believe the Arthritis Foundation of Australia is not a member of ARI. This will need to be addressed in time. I then made a speech regarding The Arthritis Foundation and the BJD NAN’s role in helping the government of Australia to make Arthritis and Musculoskeletal conditions a National Health Priority. I also stressed the importance of Patient representatives being included and involved in all areas of not only the BJD but professional organisations around the world where the aim is to help people affected by arthritis and musculoskeletal conditions. Their response was very positive and I don’t think one delegate left the conference without thanking me for my contribution. I was most grateful. Before lunch we were updated regarding a WHO-BJD project called the International Classification of Functioning that gives us a unique insight into the way we can uniformly group bone and joint disease patient problems to directly compare with other world wide problems.
After lunch the Project Group Sessions started. This was an initiative that was started at last years World Network Conference. This years group topics included Changing the Priorities, Corporate Initiatives, Communication Strategies, Ambassador Program-Action, Global Strategy Action Group, Standardised Evaluation of Treatment and Care, Patient Advocacy-Action, Curriculum Action Group, and Road Safety Action Group. All groups convened for an hour and a half and discussed all aspects of the topic. Our findings were then tabled in a PowerPoint presentation and presented back to the delegates on mass at the end of the conference. I believe these presentations will be available on CD before too long. The topics were excellent and the groups were divided in a very even manner but I feel we could have somehow varied the members of the groups so as not to have the same issues raised consistently. If we change the make-up of the group when we change the topic we will get a more evenly represented report.
On the second night of the conference we were taken to the Reichstag for a magnificent night of food, drink and entertainment with a surprise floorshow by none other than Marlene Dietrich. I was also given the honour of speaking on the night on behalf of all consumer groups and patient representatives. I was very gracious with my words but did make mention of the fact that we should have been represented at the opening ceremony. I am confident the same mistake will not be made again.
On the last day of the conference we mainly concentrated on the road ahead. The day started with a presentation on Osteoporosis and the need for early intervention. This was followed by an excellent presentation from Professor Kai-Ming Chan on Strategic Planning from regional and a global perspective. His theme certainly mirrored that of the conference which was the formation of strong partnerships and the development of strong consumer groups, especially in regions where they are lacking. We then heard a presentation about improving education in medical students focusing on musculoskeletal conditions. This is indeed a world wide problem and another area where the BJD can make a real difference.
Another interesting session commenced after lunch when regional council meetings were convened. As a representative from Australia I was involved with the South East Asian group and our main topic of discussion was the implementation of consumer groups around Asia. I have been asked to be heavily involved as they feel my experience to date with national and regional groups and my determination to make programs more accessible for patients and their families, along with my ability to articulate the problem will be very useful. This is a huge task to undertake but there is certainly a need and with some passionate and determined people we can pave the road to a better place.
Another tremendous initiative was the development of E-Posters, which were placed around the lobby of the Grand Hotel Esplanade where we were accommodated very well. Each NAN was asked to complete an E-Poster outlining their commitments, Goals and achievements over the past 12 months. It gave all participants an excellent insight into the workings of other country NAN’s and the initiatives they have embarked upon. The E-Posters were then graded on several areas and awards were handed out at the conclusion of the conference to those NAN’s whose efforts were felt to be of the highest standard.
Overall I feel the Network Conference was a great success. On a personal note, I was able to meet many enthusiastic people from around the globe and share ideas that will help achieve our common goal. As Australian representatives I feel Professor Peter Brooks and myself were able to contribute a great deal to the conference and made a lot of people realise how much can be done and still needs to be done. For what Peter and I lack in height we certainly make up for in knowledge, understanding and heart.
What we bring back from the meeting is a greater understanding, of what we can do locally to more effectively achieve our BJD goals. How we can relate our successes to help our neibouring South East Asian friends and ultimately how we can make a difference on a global scale.
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