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ANNEX 2: Physical and Complex Disabilities Client Group R&D Priorities: Priority 3: Outcome measures

  • Last modified date:
    8 February 2007

Priority 3: Outcome measures, targets and organisations for health and social care

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Importance

The ultimate objective of health services research should be benefit to service users. They have a clear idea of their own needs and of the areas of service provision that could be improved. Their views, therefore, need to be taken into account in planning and undertaking research. This does not usually happen in the field of physical and complex disabilities. The focus of research in this field is often not what disabled people think it should be or what they want. For example some people with spinal cord injury would regard the ability to control their bowel and bladder as more important than acquiring the ability to walk using technology. Some disabled people argue that much research assumes disabled people object to being disabled and wish to become able-bodied. This is not necessarily so. Disabled people may find a new purpose to their lives which accepts rather than seeks to overcome their disability, making the search for a cure less important.

There is a need to explore different ways to involve disabled people and ensure their views are represented. While accepting that difficulties exist in securing the consumers' perspective, these should not be accepted as insurmountable obstacles. No single disabled person can realistically represent the entire disabled community, it is important to involve a number of disabled people and to gain the views of those organisations representing disabled people. This applies specifically to research which is addressing the effects of disability, but also to more general work concerned with the organisation and delivery of services. There is a need to develop guidelines which ensure that the views of disabled people are adequately represented to the planners and managers of services.

While it is difficult to define objectives which could guide a research programme in this field it possible to view this priority as primarily a development issue.

Examples of Research and Development Objectives

  1. To explore methods of ensuring that disabled spokespeople have links with a wide range of disabled people and disability organisations.
  2. To identify effective methods of identifying disabled people's perceptions of research and development priorities.
  3. To investigate how the consumers' views of appropriate outcome measures for new technologies relating to disability can be incorporated into evaluations of these technologies.

References

Oliver M. 1992. Changing the Social Relations of Research Production? Disability, Handicap and Society, 7, pp 101-114.

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