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Health Services Research Unit

Understanding experiences of research or of clinical trials

Understanding experiences of research or of clinical trials

We design and deliver studies that explore participants' and researchers' experiences of many aspects of RCTs across a range of clinical areas and using a range of different methodologies.  Some of these studies have been primary qualitative studies (using interviews, focus groups and non-participant observations) that have explored the following:

  • patients experiences of the recruitment process;

  • patients experiences of retention in trials;

  • stakeholders (patients, trialists, research nurses, trial managers, ethics committee members) perceptions of how best to support informed decisions about trial participation and what outcomes matter for evaluation;

  • development of measures of decision quality for RCT informed consent;

  • trial site staff’s (consultants and research nurses) experiences of recruiting to RCTs;

  • surgeons and methodologists perceptions and beliefs about expertise based RCTs;

  • stakeholders’ beliefs and perceptions of placebo controlled surgery.

In addition to primary studies, we have also delivered a number of syntheses of qualitative studies exploring participant reported reasons for trial participation or drop-out.

Work in this area is actively ongoing across the portfolio of RCTs and includes:

  • Minority ExpeRiences In Trials (MERIT): Understanding why ethnic minority groups are under-represented in trials through a rapid qualitative evidence synthesis, and mapping evidence to find solutions 

  • TRIP: Implementation of trial methods research

Contacts

Status

Ongoing

Publications

Lawrie, L, Duncan, E, Dunsmore, J, Newlands, R, Gillies, K.(2021) Using a behavioural approach to explore the factors that affect questionnaire return within a clinical trial: a qualitative study based on the Theoretical Domains Framework. BMJ Open, vol. 11, no. 4, e048128

Goulao, B, Poisson, C, Gillies, K. (2021) Patient and public involvement in numerical aspects of trials: a mixed methods theory-informed survey of trialists’ current practices, barriers and facilitators. BMJ Open, vol. 11, no. 3, e046977

Skea, V, Newlands, R, Gillies K. (2019) Exploring non-retention in clinical trials: a meta-ethnographic synthesis of studies reporting participant reasons for drop out  BMJ Open, vol 9, no 6

Cook, JA, Campbell, MK, Gillies, K, Skea Z (2018) Surgeons' and methodologists' perceptions of utilising an expertise-based randomised controlled trial design: a qualitative study Trials. 2018 Sep 6;19(1):478. doi: 10.1186/s13063-018-2832-z

Boylan, A-M, Locock, L. & Machin, L. 'From waste product to blood, brains and narratives: developing a pluralist sociology of contributions to health research'. Sociology of Health & Illness

Locock, L. & Boylan, A-M (2016). 'Biosamples as gifts? How participants in biobanking projects talk about donation'. Health Expectations, vol 19, no. 4, pp. 805-816.

Skea, V, Newlands, R, Gillies K. (2019) Exploring non-retention in clinical trials: a meta-ethnographic synthesis of studies reporting participant reasons for drop out  BMJ Open, vol 9, no 6

Cook, JA, Campbell, MK, Gillies, K, Skea Z (2018) Surgeons' and methodologists' perceptions of utilising an expertise-based randomised controlled trial design: a qualitative study Trials. 2018 Sep 6;19(1):478. doi: 10.1186/s13063-018-2832-z

Boylan, A-M, Locock, L. & Machin, L. 'From waste product to blood, brains and narratives: developing a pluralist sociology of contributions to health research'. Sociology of Health & Illness

Skea, ZC, Treweek, S. & Gillies, K. (2017). 'It’s trying to manage the work”: A qualitative evaluation of recruitment processes within a UK multi-centre trial'. BMJ Open, vol 7, no. 8, pp. 1-8.

Locock, L. & Boylan, A-M (2016). 'Biosamples as gifts? How participants in biobanking projects talk about donation'. Health Expectations, vol 19, no. 4, pp. 805-816.

Gillies K, Entwistle V, Treweek SP, Fraser C, Williamson PR, Campbell MK. Evaluation of interventions for informed consent for randomised controlled trials (ELICIT): protocol for a systematic review of the literature and identification of a core outcome set using a Delphi survey. Trials. 2015 Oct 27;16:484.

Luchtenberg, M., Maeckelberghe, E., Locock, L., Powell, L. & Verhagen, AAE. (2015). 'Young People's Experiences of Participation in Clinical Trials: Reasons for Taking Part'. American Journal of Bioethics, vol 15, no. 11, pp. 3-13.