iiinova — where your digital self keeps evolving

Erin Crellin @erincrellin.bsky.social · 27/05/2025

Such a fabulous suite of resources that showcases the immense value of co-design. Look forward to learning more about their use in practice and impact. #genomics #equity #rarediseases

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Reposted by Erin Crellin

European Society of Human Genetics @eshg.bsky.social · 24/05/2025

Attend the ELPAG Award lecture at 14:15 at #eshg2025 with Sylvia Metcalfe who played a leading role in setting up the Genioz project and find out about her research that led to the ELPAG Award.

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Erin Crellin @erincrellin.bsky.social · 11/03/2025

Great to see participant involvement, population diversity & ELSI highlighted (among others) as key pillars of #genomics programs internationally

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Reposted by Erin Crellin

Zornitza Stark @zornitza.bsky.social · 06/02/2025

What happens when #genomic testing is funded?🧬 👉 rdcu.be/d8MSL Last 10yrs 🇦🇺: Many tests approved as evidence grows ✅ BUT testing volumes low AND inequitable access Budget impact of #genomics minor: AU$3Mpa or <0.01% of all health expenditure 💰 @ausgenomics.bsky.social @iliasgoranitis.bsky.social

rdcu.be

Utilisation of subsidised genetic and genomic testing in a publicly funded healthcare system 2014–2023

European Journal of Human Genetics - Utilisation of subsidised genetic and genomic testing in a publicly funded healthcare system 2014–2023

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Reposted by Erin Crellin

Cathy Quinlan ☘️ 🇦🇺 🌱 @cathyquinlan.bsky.social · 04/02/2025

Now this is fascinating! 🌟 Genomic medicine is expanding beyond genetics clinics, but how do we make it sustainable? A new paper highlights the power of non-geneticist champions. 🧵1/4 www.nature.com/articles/s41...

nature.com

Non-geneticist champions are essential to the mainstreaming of genomic medicine - European Journal of Human Genetics

European Journal of Human Genetics - Non-geneticist champions are essential to the mainstreaming of genomic medicine

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Reposted by Erin Crellin

Australian Genomics @ausgenomics.bsky.social · 23/01/2025

A new interactive online tool developed by Australian Genomics provides easy and accessible information in bite-sized chunks to guide patients through the key concepts of genomic testing. Learn more: www.australiangenomics.org.au/new-online-c... #genomics #genomictesting #consent #onlinetool

australiangenomics.org.au

New online consent tool for patients — Australian Genomics

Informed consent is a critical component of genomic and genetic testing. It is a process whereby a patient agrees to undergo genomic testing in full knowledge of the potential risks, benefits and outc...

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Reposted by Erin Crellin

Genetics in Medicine @gimjournal.bsky.social · 17/01/2025

Separating immediate genomic diagnosis from broader genetic screening helps families with critically ill children focus on urgent decisions first: Flexible timing for additional screening later supports better decision-making bit.ly/3C0S65J

Screenshot of Figure 2: Ease of decision-making after genetic counseling (survey 2). A. The percentage of respondents indicating each decision was easy to make. B. Ease of decision-making by screening uptake for each choice. Values displayed as a percentage of respondents indicating the decision was easy or not easy, by screening test decision (uptake vs decline).

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Erin Crellin @erincrellin.bsky.social · 09/01/2025

Great to see patient involvement featured in the revisions to the Declaration of Helsinki #patientexperience #livedexperience

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Reposted by Erin Crellin

Zornitza Stark @zornitza.bsky.social · 16/12/2024

📣And out now in Genetics in Medicine: How do we best support choices when offering #genomic screening? @ausgenomics.bsky.social Check out our 2-step model👇 doi.org/10.1016/j.gi... Terrific collab @yvonnebombard.bsky.social & GeneticsAdviser! 🇨🇦🇦🇺 @genetic-fi.bsky.social @stephaniebest.bsky.social

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Erin Crellin @erincrellin.bsky.social · 13/12/2024

So pleased to see attention being drawn to the often inaccessibility of PDFs. Publishers should be adhering to digital accessibility guidelines! No one should be excluded from academia.

w3.org

WCAG 2 Overview

Introduces the Web Content Accessibility Guidelines (WCAG) international standard, including WCAG 2.0, WCAG 2.1, and WCAG 2.2. WCAG documents explain how to make web content more accessible to people ...

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Reposted by Erin Crellin

Australian Genomics @ausgenomics.bsky.social · 28/11/2024

Join us next Wednesday for the #GCRConnect Showcase and hear more about what genetic counsellors get up to in research. More info and link to register below ⬇️

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Reposted by Erin Crellin

Zornitza Stark @zornitza.bsky.social · 20/11/2024

📣 Out now in #HumanGenomics! 🤔 What do the public think about the use of AI in #genomic medicine? 👉 rdcu.be/d0PLP Benefits: efficiency ⬆️ errors ⬇️ Concerns: data security 🔐 discrimination Who would be liable for error? 🤖👩‍⚕️ @genetic-fi.bsky.social Danya Vears & Jack Harrison 👏

rdcu.be

Analysis of public perceptions on the use of artificial intelligence in genomic medicine | Human Genomics

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Reposted by Erin Crellin

Kellie O’Callaghan @kellieocallaghan.bsky.social · 16/11/2024

Patient engagement is often described as the process of involving patients in healthcare research, decision-making & co-design. But there’s a deeper layer we rarely discuss: patient engagement is actually grief work •Linxi Mytkolli💭 tinyurl.com/3srhxdwm #PatientExperience #LivedExperience #Health

tinyurl.com

Why Patient Engagement is Actually Grief Work

Patient engagement is often described as the process of involving patients in healthcare research, decision-making, and co-design. But there’s a deeper layer we rarely discuss: patient engagement is a...

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