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Patient representatives' contribution during pharmaceutical research Passed

Tuesday May 14, 2024 15:44 - 16:30 Poster Arena

Presenter: Elin Bruto Winberg

Track: Posters, Patient and Public Involvement

Poster can be found in location 60.

Introduction: Previous research indicates that the structure of patient participation in research and the competence possessed by patient representatives influence their experience being involved in research. The role and possibilities of patient representatives has not been explored extensively and specifically in relation to pharmaceutical research and is therefore an area where further exploration is needed. Aim: The aim of the study was to explore the possibilities for patient representatives to contribute during pharmaceutical research through non-clinical patient participation, what resources are necessary for participation and how the subjective knowledge of patient representatives is valued. The study was motivated by the ambition to further evolve patient participation within pharmaceutical research and explore the possibilities of patient representatives. Methods: Semi-structured qualitative research interviews were conducted with six patient representatives from different patient organisations. After the interviews were transcribed, a qualitative content analysis was performed where codes, categories and themes were identified. A theoretical framework was applied during the analysis of the data collected through the interviews. One of the main theories used was Pierre Bourdieu’s theory on capital and this concept was related to resources necessary for patient participation. Results and conclusion: Patient representatives find it difficult to access scientific knowledge and this prevents them from contributing to pharmaceutical research. Economic, social and specifically scientific capital are the forms of capital, and therefore resources, most necessary for non-clinical patient participation. To promote patient participation, it's essential to determine the requisite level of resources that patient representatives should ideally possess. The subjective knowledge of patient representatives is perceived, by the representatives themselves, as highly valued by researchers. It should however be specified when the knowledge is relevant for effective contribution to pharmaceutical research. In conclusion, the role of patient representatives could be further specified to increase their possibilities of contributing to pharmaceutical research. 

Language

English

Seminar type

Poster

Conference

GCPCC

Authors

Elin Bruto Winberg, Kiana Kiani

Lecturers

Elin Bruto Winberg Presenter

GPCC Göteborgs universitet