Qualitative data sharing practices in clinical trials in the UK and Ireland: towards the production of good practice guidance.

: Data sharing enables researchers to conduct novel research with previously collected datasets, thus maximising scientific findings and cost effectiveness, and reducing research waste. The value of sharing, even de-identified, quantitative data from clinical trials is well recognised with a moderated access approach recommended. While substantial challenges to sharing quantitative data remain, there are additional challenges for sharing qualitative data in trials.

Research priorities to improve the health of children and adults with dysphagia: a National Institute of Health Research and Royal College of Speech and Language Therapists research priority setting partnership.

Objective: To conduct the first UK-wide research priority setting project informing researchers and funders of critical knowledge gaps requiring investigation to improve the health and well-being of patients with eating, drinking and swallowing disorders (dysphagia) and their carers.

Design: A priority setting partnership between the National Institute of Health Research (NIHR) and the Royal College of Speech and Language Therapists using a modified nominal group technique. A steering group and NIHR representatives oversaw four project phases: (1) survey gathering research suggestions, (2) verification and aggregation of suggestions with systematic review research recommendations, (3) multistakeholder workshop to develop research questions, (4) interim priority setting via an online ranking survey and (5) final priority setting.

A study protocol of qualitative data sharing practices in clinical trials in the UK and Ireland: towards the production of good practice guidance.

: Data sharing enables researchers to conduct novel research with previously collected data sets, thus maximising scientific findings and cost effectiveness, and reducing research waste. The value of sharing anonymised data from clinical trials is well recognised with a moderated access approach recommended. While substantial challenges to data sharing remain, there are additional challenges for qualitative data.