Personal experiences of taking part in clinical trials

a qualitative study

Louise Locock (Corresponding Author), Lorraine Smith

Research output: Contribution to journalArticle

35 Citations (Scopus)

Abstract

OBJECTIVE: To investigate people's experiences of and attitudes to participation in clinical trials. METHODS: 42 in-depth qualitative interviews, covering different types of trial and intervention, analysed thematically using a modified grounded theory approach. RESULTS: Many participants argued for a right to participate in research. This may be partly because personal benefit was a common primary motivation for taking part - but the benefits cited were not only personal health outcomes. Whilst most were satisfied with information received, some felt it was too complex. Gaps in understanding were evident, especially around randomisation, but trust in trial staff was high. Desire for feedback of trial results was common. CONCLUSION: Unintended consequences may arise from efforts to give full information and challenge therapeutic misconceptions. People wanted 'enough' information to help them decide, but their definition of 'enough', and the relative importance of written information versus discussion/advice from trusted professionals, varied by individual. In seeking to minimise misunderstanding we stress uncertainty and risk but have perhaps lost sight of the value people derive from trial participation. PRACTICE IMPLICATIONS: Better information on trial availability, shorter trial leaflets and greater emphasis on face-to-face discussion are suggested. Recruitment literature could appeal to a wider range of benefits.
Original languageEnglish
Pages (from-to)303-309
Number of pages7
JournalPatient Education and Counseling
Volume84
Early online date6 Jul 2011
DOIs
Publication statusPublished - 1 Sep 2011

Fingerprint

Therapeutic Misconception
Random Allocation
Uncertainty
Motivation
Clinical Trials
Interviews
Health
Research
Grounded Theory

Keywords

  • clinical trials
  • personal benefit
  • personal experiences
  • randomisation
  • informed consent

Cite this

Personal experiences of taking part in clinical trials : a qualitative study. / Locock, Louise (Corresponding Author); Smith, Lorraine.

In: Patient Education and Counseling, Vol. 84, 01.09.2011, p. 303-309.

Research output: Contribution to journalArticle

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abstract = "OBJECTIVE: To investigate people's experiences of and attitudes to participation in clinical trials. METHODS: 42 in-depth qualitative interviews, covering different types of trial and intervention, analysed thematically using a modified grounded theory approach. RESULTS: Many participants argued for a right to participate in research. This may be partly because personal benefit was a common primary motivation for taking part - but the benefits cited were not only personal health outcomes. Whilst most were satisfied with information received, some felt it was too complex. Gaps in understanding were evident, especially around randomisation, but trust in trial staff was high. Desire for feedback of trial results was common. CONCLUSION: Unintended consequences may arise from efforts to give full information and challenge therapeutic misconceptions. People wanted 'enough' information to help them decide, but their definition of 'enough', and the relative importance of written information versus discussion/advice from trusted professionals, varied by individual. In seeking to minimise misunderstanding we stress uncertainty and risk but have perhaps lost sight of the value people derive from trial participation. PRACTICE IMPLICATIONS: Better information on trial availability, shorter trial leaflets and greater emphasis on face-to-face discussion are suggested. Recruitment literature could appeal to a wider range of benefits.",
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