Reposted by Julia FrostJoão Florêncio @noisybits.bsky.social · 24/06/2026c.org/zGdWtyWgpbc.orgSign the PetitionStop Redundancies at the University of Exeter 088
Reposted by Julia FrostBen Phillips @benphillips1989.bsky.social · 23/06/2026A statement from Exeter UCU branch @ucu.org.uk - please share far and wide. 16231273
Reposted by Julia FrostLawrence (Larry) Mróz @drmroz.bsky.social · 08/12/2025Can the Development of Orphan Drugs Include Wider Patient Engagement? A Citizens' Jury to Explore a Promissory Notion - PubMed pubmed.ncbi.nlm.nih.gov/41347535/pubmed.ncbi.nlm.nih.govCan the Development of Orphan Drugs Include Wider Patient Engagement? A Citizens' Jury to Explore a Promissory Notion - PubMedA 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 … 111
Julia Frost @jufrost.bsky.social · 27/09/2025Thanks 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...arc-swp.nihr.ac.ukReflections on the Qualitative Research Symposium 2025: Innovation and Creativity for Impact - PenARCOn 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... 151
Reposted by Julia FrostExeter Collaboration for Academic Primary Care @apexcomms.bsky.social · 09/07/2025Published 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/2efewbcdtinyurl.comUnderstanding 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... 021
Julia Frost @jufrost.bsky.social · 04/06/2025Great 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.socialactionpf.orgThe power of patient involvement in research – Action for Pulmonary FibrosisThe power of patient involvement in research: How APF is amplifying the voices of people affected by pulmonary fibrosis and ways you can get involved. 011
Julia Frost @jufrost.bsky.social · 17/04/2025Could patient insight reports that inform clinical drug trial development better represent the needs of patients with IPF? Yes! doi.org/10.1111/hex....doi.orgWidening Patient Engagement for Rare Disease Drug Trials: The Perspectives of Patients With Idiopathic Pulmonary Fibrosis on Participating in Clinical Drug Trials and Drug Trial DesignBackground 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... 000
Reposted by Julia FrostVicki Goodwin MBE @vickigphysio.bsky.social · 13/02/2025Great 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 134
Reposted by Julia FrostVicki Goodwin MBE @vickigphysio.bsky.social · 04/12/2024Come 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...exeter.ac.ukAward details | Funding and scholarships for students | University of Exeter 146
Julia Frost @jufrost.bsky.social · 13/09/2024Great to see pharma acknowledging that patients can make such a valuable contribution to making clinical trials more accessible 1.reutersevents.com/LP=37335 263
Reposted by Julia FrostProf. Virginia Braun (she/her they/them) @ginnybraun.bsky.social · 28/07/2024How 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. Please share www.sciencedirect.com/science/arti...sciencedirect.comHow do you solve a problem like COREQ? A critique of Consolidated Criteria for Reporting Qualitative ResearchIn this paper, we argue that COREQ – the consolidated criteria for reporting qualitative research (Tong et al., 2007) – is a problem, and a problem in… 23019
