m. schrieks^1
1Department of lobbying, Reumapatientenbond, Amersfoort, Netherlands

Abstract: Exchanging knowledge of a relatively experienced Dutch patient league and several younger organizations elsewhere in Europe: analyzing our experience so far and formulating success factors

Over the past 25 years, the Dutch arthritis patient league has developed into a well-functioning organization. In the context of Eular, we share experience and knowledge with organizations in other countries to improve the quality of life and care for people with arthritis. To be sure, we also see it as our responsibility to assist organizations elsewhere in Europe to improve their work in this area. An interesting question is in what way our experience may be valuable to other people working in other contexts. Can such be transferred in a straightforward manner? Or does something else ‘happen’ when experience and knowledge is shared across national (cultural, economic and institutional) borders? A related question is what factors determine success or failure in exchange projects. Answering this question, I draw on our involvement and experience in several projects in three Easteuropean countries.

In Poland, we tried to transfer our project “Patient Partners”. So, we communicated the project plan and the associated budget, assuming that the Polish partners would be able to apply the concept on the basis of our one-way transfer of information. We had not paid too much attention to cultural and institutional differences that could render the concept less appropriate.

In Lithuania, we thus changed our approach. Next to the transfer of information, we maintained frequent contact regarding the project plan and implementation. In this regard, the speedy development of good personal relations and the presence of a passionate and professional local leader representing the local patient league was very helpful. The project also turned out to be successful, however, because of previous institution building efforts by Sweden (educational visit), the EU (accession instruments) and Eular. Next, Scotland helped to start the training program with timely funding—crucial to get things going. Then, funds became available for one more year for the diffusion of training activity towards several regions. As a result, the training course proved its value in the Lithuanian context.

In Romania, we continued adjusting our approach. This time, Eular (through an educational grant) enabled us to meet twice within half a year. These meetings were useful to match supply and demand, so to speak. In Romania, it was possible to elaborate on this and adjust our experience to the local context—bottlenecks and opportunities. For example, the political, economic and historical context renders a very different meaning to the notion of “volunteers”. Where people struggle to meet basic needs (food, shelter, safety), effort goes in that direction, not necessarily or primarily in the direction of the volunteer work that is so important in the Dutch context. Another example refers to funding. Options available in one country may be absent in another..A third example is the ‘user-led’principle, which does not fit with the traditional and ongoing relation between doctor and patient in Romania. Respect and diplomacy were helpful to create some initial awareness regarding the necessity of change in this regard, on the side of doctors and patients (“it takes two to tango”). Finally, it helped to focus on a concrete and short-term result; the translation and reproduction of four information brochures.

The above leads us to formulate a number of success factors for effective exchange between patient leagues.