Behavioural scientist in rare disease & genomics @ich_ppp | Interest in lived-experience, decision-making & outcomes | NIHR Advanced Fellow @NIHRresearch
London, England
Joined October 2017
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Well done @Ria_Patel589 for your award at the @RCPCH conference today presenting our research on #anxiety and #qualityoflife for parents of children with rare undiagnosed conditions. Great to see this work resonate with paediatricians.
@ich_ppp @UCLchildhealth @NIHRresearch
New paper on preparedness of community paediatricians for genomic medicine (GM): rdcu.be/edlBt
Whilst viewed positively, variation in uptake exists due to lack of time, resources, skills and not seeing GM as a priority
@ich_ppp @UCLchildhealth @NIHRresearch
Well done @Ria_Patel589 for an excellent presentation!
Delighted to have presented an oral presentation at #BSGM2024 on parent experiences of whole genome sequencing for paediatric rare disease diagnosis. @CelineLewis23 @ich_ppp @UCLchildhealth
Celine Lewis retweeted
Let's set the record straight!!
Read our joined statement with @eshgsociety condemning attempts to resurrect discredited race science to promote the pseudoscience of eugenics, in response to recent investigation shared by the @guardian and @Channel4
bsgm.org.uk/news/bsgm-eshg-c…
Very pleased to be leading with @MelHill02699279 the evaluation of @GenomicsEngland Generation Study to understand the acceptability and feasibility of genomic newborn screening. Great team involved including @jbuchanan_ox @CeciliaVindrola @GeneticAll_UK @KerryLeeson @ich_ppp
A @ucl team to assess clinical, social and economic impacts of @GenomicsEngland Generation Study: screening newborns for 200+ genetic conditions.
The study could shape future healthcare practices.
Led by Dr @CelineLewis23 & Dr Melissa Hill (GOSH).
bit.ly/3YmFGgR
Celine Lewis retweeted
In July, with @CelineLewis23 and @zylberek, I presented at the @GenomicsEngland Research Summit on our process and impact evaluation of the Generation Study.
You can watch a recording of this presentation here: vimeo.com/genomicsengland/re…
#healtheconomics #newborn #screening
To coincide with DNA Day, I was interviewed by the Journal of Genetic Counseling about the experience of parents receiving a 'no finding' result from whole genome sequencing. Listen to episode 3 here: dnadialogues.podbean.com/
@NIHRresearch @ich_ppp @JanaGurasashvi @SWAN_UK
We are looking for parents of children aged 5 and under to join our Parent Advisory Group. We will be evaluating a new project which will sequence the DNA of 100,000 newborn babies in England. 4 meetings over 18 months. This is a PAID ROLE. More details and to apply here:
This week I joined a conversation with the @GenomicsEngland podcast, where we discussed the impact of a “no primary finding” result, and the experiences, expectations, and hope for those that undergo genetic testing.
Listen here: ow.ly/SQ4B50QT66J
@ich_ppp @NIHRresearch
Calling all #paediatricians working in England! Please complete our short survey on your experience of using genomic tests in the NHS Genomic Medicine Service. LINK HERE:
redcap.slms.ucl.ac.uk/survey…
@ich_ppp @CommChildHealth @GenomicsEngland @BACD_tweets
Calling all #paediatricians and #communitypaediatricians working in England! We are conducting a short survey looking at your experience of using genomic tests such as whole genome sequencing in the NHS Genomic Medicine Service . Please help:
tinyurl.com/paediatricWGS
New #qualitative paper led by the excellent @rhysdore looking at the experience of transition to adulthood in young people with primary ciliary dyskinesia.
tinyurl.com/3m7a2cws
Transition marked by identity-formation, creating support systems and becoming an autonomous adult.
I'm on the organising committee for this year's UCL Qualitative Health Research Network conference (in-person workshop 16 Feb, followed by online conference 28-29 Feb). The programme looks super interesting. Hope to see some of you there!
Our exciting conference programme for the upcoming @UCL_QHRN conference is now available!
The programme for the conference days and pre conference workshop are available to download at our website! Please share!
Find out more and register: ucl.ac.uk/qualitative-health…
Very pleased for (and proud of) my Cardiff MSc student Holly being featured in the most recent @GenomicsEngland Researcher On The Rise blog 😁. Read all about her research looking at the content of NHS #WGS results letters.
How readable are patient letters in the NHS Genomic Medicine Service?
Researcher Holly Ellard explores communication in the early GMS by looking at letters sent to patients.
Catch the blog to see what she found.
ow.ly/1Pzq50Qp5g6
#genomics #communication
ALT Holly Ellard headshot against a light green background with circle and pill shapes in various shades of green.
Our new paper reporting the challenges of implementing the NHS genomic medicine service is out now in @FrontGenetics. We report on the early barriers and enablers of implementing system-wide change within a complex healthcare system:
tinyurl.com/ysxv46te
Thanks to co-authors including @betty_friedrich @ProfLakhanpaul @CeciliaVindrola @annekeluc Angus Clarke and Chris Patch. Also to @NIHRresearch @ich_ppp @GenomicsEngland and all the interviewees from across the various GMSAs and GLHs.
Our new paper looking at the experiences of parents who don't get a result from #WGS in the #genomes100k is out now in @GeneticCouns
Our proposed theory “The Disequilibrium of Hope,” highlights the dynamic and modifiable experience parents encounter.
onlinelibrary.wiley.com/doi/…
Big thanks to all the co-authors including @JanaGurasashvi1 @MelHill02699279 @Silverio_SA_ Michelle Peter and Bethany Stafford-Smith and to @SWAN_UK for supporting this important research as well as:
@ich_ppp @NIHRresearch @GenomicsEngland @cardiffuni
Some of our recommendations for practice highlighted below: For the full set, please see our paper: onlinelibrary.wiley.com/doi/…
Celine Lewis retweeted
🚨Abstract submission for our conference on 28/29 February 2024 has been extended! New deadline 31st October 2023🚨
Theme: Exploring progress: qualitative health research through crisis, disruption and emergence
Find out more & submit abstract! ⬇️⬇️
ucl.ac.uk/qualitative-health…