Abstract
Kerrison and colleagues’ qualitative analysis of findings from focus groups,
semi-structured telephone interviews and questionnaires with ‘the subjects of clinical
research’ in order to ‘explore the patient's experience of clinical research with a view to
improving its conduct’ produced some useful recommendations which should be noted
(
For example, had they included a patient on the writing team for this report, or invited comment from some participants, they might have begun by amending the title, so that it reflects that this is an interpretation of researchers’ findings from a small qualitative study of ‘patients’ experiences of being involved as participants in clinical research’. Plural and ‘participant’, please!
A review of active public and patient involvement would have revealed a rich seam of patients’ experiences of involvement in all stages of the research process in many disease areas. For example, one of the items on the NHS National Library for Health Patient and Public Involvement Specialist Library is an ECRI Report of 2002 that explores patients’ reasons for participating in clinical trials in some detail and provides a rich source of evidence. 2 Other surveys have also been reported. 3 Some patients' accounts on the DIPEx 4 website include their experiences of being invited to participate in clinical research. They are developing a new module about patients' experiences of being invited to participate in clinical trials. As suggested, views of ‘refusers’ would be enlightening (and will be sought by DIPEx): not just patient refusers, 5, 6 but also clinicians. 7
Footnotes