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HSO.
The Swedish Co-Operative Body of Organisations of Disabled People.
Stockholm, Sweden.
Ingemar Färm.
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This publication is dealing with the report of Sweden on experiences of user participation in R&D oriented work.

Introduction

A conclusion of an inquiry by HSO is that the organisations of disabled people have had since long on all levels in the society (state, counties, municipalities) functioning ways of co-operation with the authorities. They give replies on reports that the authorities have sent to the organisations, participate in investigations and committees set up by the authorities, participate in co-operating bodies with the authorities, participate in reference-, working- and assortment groups about technical aids, standardisation and R&D. The most concrete co-operation between authorities and disability organisations is taking place in some authorities' and other public bodies' special working groups. Such working groups are especially common within technical aids and standardisation activities. Several authorities and public bodies have reported that they have co-operated with disability organisations in different projects. Projects have often been established on the initiative of the organisation while the authority is a financier or a partner. In most local authorities in the country there are community councils for disabled people (KHR) with representation from both the municipality and disability organisations. KHR is only a consulting body and has been a target for a lot of criticism for only being occupied with information about such things that already are decided.

Usually an authority offers an dsability organisation to appoint a representative in e.g. a working or reference group. What we have seen it has never occurred that neither the organisation that appoints the representative or the authority concerned give the representative any special training for the mission. They take for granted that those persons who are appointed have the required knowledge. Most usual is participation in conjunction with policy discussions, planning, information and evaluation. The groups will often function as a sounding board or a forum of discussions and follow in many cases the actual questions from the beginning to the end.

There are tens of disability research institutions connected to universities and technical institutes all around the country. Co-operation with disability organisations is unequal but a discussion within the institutions and their common association will lead to an increase of users influence. In Harec at the University of Lund they have a panel of users with 9 representatives of disability organisations. Besides the most common form of co-operation is to tie a one or more users to an on-going research project, as reference persons or the like.

In technical aids activities user participation is often very concrete e.g. need evaluation, participation in elaboration of specifications of requirements, product analysis and product selection, functional judgement, trial and testing, evaluation, product information and standardisation.

What we have seen from the answers the work are taking place mainly in forms of discussions in the working groups. Here the products are presented or demonstrated and the results from e.g. the R&D work are reported. The user representatives' task is then to critically examine these reports in the light of own experience or do easier inquiries among their own organisations' members. In the assortment groups it is common with direct participation in user testing. In some cases is the user himself who carry the testing through by using the product in his own daily life.

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