Introduction From 2005, lay representatives (‘Research Partners-RPs) have been involved as memebers of the research team in a clinical trials unit, and more recently a Marie Curie facility. However, the impact of their work has not been routinely examined. The TACT study was designed as a means of evaluation.
Aim(s) and method(s) Semi-structured interviews were conducted with ten RPs and eight researchers to explore RPs’ input; documents from Trial Management Groups (TMGs), emails and relevant outputs were analysed using a Framework approach.
Results Both the RPs and researchers saw the RP as an advocate for patients. RPs generally felt welcomed into the trials unit with most happy with their level of involvement. However, some RPs spoke about a perceived bias in the unit's tendency to use more experienced RPs, the RP role being a tokenistic funding requirement, and the need for greater monitoring and support. Researchers were unclear about the degree to which RPs should be involved in their work and the processes involved in working alongside RPs. They recognised greater commitment was required of them in the RP initiative, although time pressures and stresses were barriers to achieving this.
Analysis of RP Impact led to generally unfavourable results. Evidence of input in TMGs did not equate with subsequent actions and contributions in outputs were either minimal or absent.
Conclusions Despite, a structured model of RP involvement, the results show a need for further improvement. Work is currently underway to design and implement a toolkit with which to tackle some of these challenges.
- Supportive care
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