Exploring the barriers to, and importance of, participant diversity in early-phase clinical trials: an interview-based qualitative study of professionals and patient and public representatives.

Objectives: To explore the importance of, and barriers to achieving, diversity in early-phase clinical trials.

Design: Qualitative interviews analysed using thematic analysis.

Setting And Participants: Five professionals (clinical researchers and methodologists) and three patient and public representatives (those with experience of early-phase clinical trials and/or those from ethnic minority backgrounds) were interviewed between June and August 2022.

Using Patient-Reported Outcomes in Dose-Finding Oncology Trials: Surveys of Key Stakeholders and the National Cancer Research Institute Consumer Forum.

Background: Patient-reported adverse events may be a useful adjunct for assessing a drug's tolerability in dose-finding oncology trials (DFOT). We conducted surveys of international stakeholders and the National Cancer Research Institute (NCRI) Consumer Forum to understand attitudes about patient-reported outcome (PRO) use in DFOT.

Methods: A 35-question survey of clinicians, trial managers, statisticians, funders, and regulators of DFOT was distributed via professional bodies examining experience using PROs, benefits/barriers, and their potential role in defining tolerable doses.

Exploring the experiences of people and family carers from under-represented groups in self-managing Parkinson's disease and their use of digital health to do this.

Introduction: Digital health is thought to enable people to better manage chronic conditions, such as Parkinson's. However, little is known about how people from under-represented groups with chronic conditions use digital health to self-manage.

Objective: The objective of our study was to explore the experiences of people and family carers from under-represented groups in self-managing Parkinson's, including their use of digital health to do this.

Medicines management at home during the COVID-19 pandemic: a qualitative study exploring the UK patient/carer perspective.

Objectives: To explore home medicine practices and safety for people shielding and/or over the age of 70 during the COVID-19 pandemic and to create guidance, from the patient/carer perspective, for enabling safe medicine practices for this population.

Methods: Semi-structured interviews were carried out with 50 UK participants who were shielding and/or over the age of 70 and who used medicines for a long-term condition, using telephone or video conferencing. Participants were recruited through personal/professional networks and through patient/carer organisations.

How can patient-held lists of medication enhance patient safety? A mixed-methods study with a focus on user experience.

Background: Patients often carry medication lists to mitigate information loss across healthcare settings. We aimed to identify mechanisms by which these lists could be used to support safety, key supporting features, and barriers and facilitators to their use.

Methods: We used a mixed-methods design comprising two focus groups with patients and carers, 16 semistructured interviews with healthcare professionals, 60 semistructured interviews with people carrying medication lists, a quantitative features analysis of tools available for patients to record their medicines and usability testing of four tools.

Comments on: involving service users in the qualitative analysis of patient narratives to support healthcare quality improvement.

Plain English Summary: Some previous researchers (Locock et al) have written about what may be the best way for public contributors to be involved in data analysis in research projects. Their experience has been that giving public contributors large amounts of text to read is not the best use of their time and experience. They have recommended that a better approach would be for a researcher to meet with a group of users at the start of analysis, to discuss what to look out for.