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Supporting Complex Regional Pain Syndrome through technology

Research funded by the NIHR HS&DR programme is using innovative Wiki technology and an online support forum to understand if they could be effective in supporting patients with Complex Regional Pain Syndrome (CRPS).

When people are living with a long term chronic health condition the internet can be a useful source of information and support, and may contribute to self management. Online support can be particularly beneficial to those whose condition impacts on their mobility and can offer the possibility of discussing ‘taboo’ topics. Good care for chronic illness involves: self-management; disease management by primary care teams; and case management by groups of health care professionals.

Online forums allow members to communicate with others about health issues without having to wait for an appointment.
The project, led by Dr Jeff Gavin of the University of Bath, will develop and evaluate a wiki intervention, and will also explore whether engaging users in the development of a ‘wiki’ about their condition has benefits. The team will work with people who have Complex Regional Pain Syndrome but the approach could be extended to other chronic conditions.

A wiki is a website where anyone can add, change or delete its content, and discuss these decisions. All contributions and changes to it are kept in an archive so members can ‘revert’ to a previous web page.

The researchers will build an online forum and invite members of an existing CRPS patient support group to develop and use this, to provide support for one another. This will enable them to understand how the forum is used, how supportive relationships evolve and to describe the elements of support that are established. The team will assess patient’s experiences during the course of the study, to identify the impact on their health and quality of life.

The study will involve patients generating a wiki page together which describes aspects of CRPS. Those who wish to join the forum will be asked to complete a short questionnaire to measure participants’ experience of CRPS and the support available to them.

Both the forum and the media wiki will be designed so that they can continue to run beyond the life of the research.

“We hope that by engaging forum members in the collaborative construction of a wiki focusing on CRPS, we can shed light on whether this an effective way of supporting patients in self management that improves their quality of life, for this particular illness and for other long term conditions.”

View the project page

This project was commissioned by the NIHR Health Services Research (NIHR HSR) programme under the management of the National Institute for Health Research Evaluations, Trials and Studies Coordinating Centre (NETSCC) based at the University of Southampton.

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The NIHR Health Services and Delivery Research (HS&DR) Programme is managed by the NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC). NETSCC is part of the University of Southampton funded by the NIHR, with specific contributions from the CSO in Scotland and NISCHR in Wales and the HSC R&D Division, Public Health Agency in Northern Ireland.

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