Personal experiences of clinical trials – a new website resource


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Louise Locock

DIPEx, University of Oxford, UK

Abstract

Personal experiences of clinical trials – a new website resource

The DIPEx website disseminates qualitative research into people’s experiences of health and illness. (The site is being relaunched as www.HealthTalkOnline.org this autumn). A new section is currently being prepared on people’s experiences of being invited to take part in a clinical trial. A maximum variation sample of people of approximately 40 people has been recruited with a range of experiences of different types of trial and interventions, including some people who have decided not to take part in a trial and some who have withdrawn. Each person takes part in an in-depth interview, in their own home, which is video or audio-recorded and transcribed verbatim. A systematic thematic analysis is undertaken, using computer-assisted qualitative data analysis software. The website will present findings on a wide range of themes emerging from the interviews, illustrated by individual video and audio clips. Findings presented will include topics such as:

•How were people approached about taking part?

• What motivated them to take part (or to decline)?

• What information were they given and what else would they have liked to

know?

• How well were the trial design and methods explained?

• What did the trial involve for them?

• How do they feel about it looking back?

• What feedback would they like about trial results?

The resulting website aims to help other people thinking about taking part in a trial to make a more informed choice by listening to others’ experiences, and to learn more about trial methods and what they can expect if they take part. It will also provide a valuable teaching aid for health professionals and researchers designing trials to gain greater insight into what matters to patients.

The presentation which will present early findings from the analysis, illustrated by video clips.