Julia Frost
@jufrost.bsky.social
📤 197
đź“Ą 321
đź“ť 6
Associate Professor Health Services Research, University of Exeter
reposted by
Julia Frost
Lawrence (Larry) MrĂłz
5 months ago
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/
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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 …
https://pubmed.ncbi.nlm.nih.gov/41347535/
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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...
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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...
https://arc-swp.nihr.ac.uk/news/reflections-on-the-qualitative-research-symposium-2025-innovation-and-creativity-for-impact/
8 months ago
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reposted by
Julia Frost
Exeter Collaboration for Academic Primary Care
10 months ago
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
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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...
https://tinyurl.com/2efewbcd
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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
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The power of patient involvement in research – Action for Pulmonary Fibrosis
The power of patient involvement in research: How APF is amplifying the voices of people affected by pulmonary fibrosis and ways you can get involved.
https://www.actionpf.org/news/the-power-of-patient-involvement-in-research
11 months ago
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Could patient insight reports that inform clinical drug trial development better represent the needs of patients with IPF? Yes!
doi.org/10.1111/hex....
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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...
https://doi.org/10.1111/hex.70260
about 1 year ago
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reposted by
Julia Frost
Vicki Goodwin MBE
over 1 year ago
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
add a skeleton here at some point
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reposted by
Julia Frost
Vicki Goodwin MBE
over 1 year ago
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...
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Award details | Funding and scholarships for students | University of Exeter
https://www.exeter.ac.uk/study/funding/award/?id=5457
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Great to see pharma acknowledging that patients can make such a valuable contribution to making clinical trials more accessible
1.reutersevents.com/LP=37335
over 1 year ago
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reposted by
Julia Frost
Prof. Virginia Braun (she/her they/them)
almost 2 years ago
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. Please share
www.sciencedirect.com/science/arti...
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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…
https://www.sciencedirect.com/science/article/pii/S2590260124000213
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