2012 Conference

Abstract: Our theme is how to enable wide participation in a programme of research.

Much user involvement in research relies on researchers working with two representative research partners. We present experience from an alternative model of research participation where a group of service users has worked together for four years to evaluate implementation of a Chronic Conditions Management policy. The group, of 12-25 chronic conditions patients and carers, has developed a model to participate in a programme of research evaluating chronic conditions management services in Wales. A steering group provides support and mutual learning. Members, who take part in research activities, present a group perspective and aim to be more representative than individuals when participating in research. A two-way reporting system enables them to exchange views, information and be mutually accountable, responsible and reflect the group voice.

Representative members have participated in more than 30 research activities. Members also attend a strategic research planning committee and research management group meetings of two ongoing studies. Members named the group SUCCESS – Service Users with Chronic Conditions Encouraging Sensible Solutions.

Learning: a new model of involvement


  • how it fits together – programme evaluation, research studies and personal experience of services
  • maintaining continuity between meetings.

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Evans ~ Bridie

Bridie Evans is a health services researcher at Swansea University with special responsibility for involving people in emergency, unscheduled and trauma care research and trials. She is also undertaking a PhD, developing and evaluating a model for involving people in research about chronic conditions management.

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