Julia Frost

Great to see our Citizens' jury paper add to the understanding of how best to widen engagement in the development of orphan drugs @cjpope.bsky.social

Can the Development of Orphan Drugs Include Wider Patient Engagement? A Citizens' Jury to Explore a Promissory Notion - PubMed A patient advisory group (PAG) comprising six people with IPF gave input into all aspects of the research design and conduct, including co-design of the Citizens' Jury. Two patients from international patient organisations served as a steering group (SG). Members of both groups provided their interp …

Can the Development of Orphan Drugs Include Wider Patient Engagement? A Citizens' Jury to Explore a Promissory Notion - PubMed pubmed.ncbi.nlm.nih.gov/41347535/

Reflections on the Qualitative Research Symposium 2025: Innovation and Creativity for Impact - PenARC On 25th September 2025, the University of Exeter’s Qualitative Research Reference Group (QRRG) hosted its third annual Qualitative Research Symposium, supported by PenARC. This year’s theme, Innovatio...

Thanks to @oliwilliams.bsky.social @tomshakespeare.bsky.social and everyone else who contributed to this weeks qualtiative symposium and for giving us much to think about arc-swp.nihr.ac.uk/news/reflect...

Understanding the self-management experiences of people with heart failure with preserved ejection fraction (HFpEF), their caregivers and the health care professionals who support them: Systematic rev... The limited capacity of HCPs to support HFpEF patients and caregivers to develop effective self-management understanding and practice can lead to disempowerment and loss of control. Tailored intervent...

Published in the British journal of cardiac nursing by Assoc. Prof. Julia Frost et al: Understanding the self-management experiences of people with heart failure with preserved ejection fraction (HFpEF), their caregivers and the health care professionals who support them tinyurl.com/2efewbcd

Great to see our collaborative work on widening patient engagement for clinical drug trials and trial design shared with patients with IPF www.actionpf.org/news/the-pow... @cjpope.bsky.social @actionpfsteve.bsky.social

Widening Patient Engagement for Rare Disease Drug Trials: The Perspectives of Patients With Idiopathic Pulmonary Fibrosis on Participating in Clinical Drug Trials and Drug Trial Design Background Research about patient engagement for people with rare diseases has identified how the experiences of some members of the public are overlooked in relation to clinical trial design and tr...

Could patient insight reports that inform clinical drug trial development better represent the needs of patients with IPF? Yes! doi.org/10.1111/hex....

Great news that our CHART trial is now open to recruitment with our fab team @drandyclegg.bsky.social @jufrost.bsky.social @amandafarrin.bsky.social @janemasoli.bsky.social @emmavardy2.bsky.social and many others

Award details | Funding and scholarships for students | University of Exeter

Come and do a Dunhill Medical Trust #PhD with me and @jufrost.bsky.social looking at #CGA for people with #heartfailure and #frailty as part of the @nihr.bsky.social funded CHART trial and #processevaluation www.exeter.ac.uk/study/fundin...

Fantastic presentation of an amazing body of work

Great to see pharma acknowledging that patients can make such a valuable contribution to making clinical trials more accessible 1.reutersevents.com/LP=37335

How do you solve a problem like COREQ? A critique of Consolidated Criteria for Reporting Qualitative Research In this paper, we argue that COREQ – the consolidated criteria for reporting qualitative research (Tong et al., 2007) – is a problem, and a problem in…

How do you solve a problem like COREQ? A critique of Consolidated Criteria for Reporting Qualitative Research - ScienceDirect

New out (& maybe still uncorrected proofs) from @vicclarke.bsky.social and me.

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