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Using a MOOC to engage participants in a new profession
- 1. CHERIL CONFERENCE 30th Jan 2018 Using a MOOC to engage participants in a new profession Ang Davies
- 2. A quick aside “I need to have a think about a new presentation I am giving it called a Pecha Kucha “ “Sounds like an Japanese fruit or an Amazonian bird!”
- 3. Genomics is ………… Nature volume409 (15 February 2001) doi:10.1038/35057062
- 4. Genomics is Transforming Healthcare
- 6. Introducing the Clinical Bioinformatician
- 8. Storytelling MOOC Content week by week
- 9. 13, 000 participants since 2016
- 10. FutureLearn model: Social constructivism in action
- 11. Return on Investment? £23, 000£1700 £500 £1000
- 12. 18 – 25 & 26 – 35 age group above average How to encourage positive openness?
- 13. Stimulating Discussion So Why Should We Share Genomic Data?
- 14. Article: The Power of Data Sharing for Rare Disease Hunting down my son's killer [@mattmight] I found my son's killer. It took three years. But we did it.
- 15. Stimulating Discussion So Why Should We Share Data? One of the key points discussed in the article by Might and Wilsey is the importance of sharing data; “Share early, share often” to aid in the diagnosis of current and future patients that may present with the same symptoms, thus enabling genotype to be linked to phenotype. Now in the age of the internet and social media it should be possible to collate such genetic information but importantly in a safe way that is consented for by the patient or their representative and accessible by genetic healthcare professionals and specialist clinicians that care for these patients. Over to you What are the benefits of sharing clinical genomic data? What are the potential drawbacks? What is DECIPHER and what could be learnt from this initiative in terms of data sharing?
- 16. Discussion leading to further research opporunities “faster and improved diagnosis - so better outcome for the patient”
- 17. Data analytics enables insights to pedagogy Scenario Point
- 18. Impacting genomics through shared learning Practitioner: Having recruited and consented a number of patients and families to the 100,000 Genomes Project for rare diseases, my experience is that in general most patients tend to have surprisingly few questions about the consent form. Patient: I joined a genetic research project because I have rare blood cancer.…… I felt a sense of duty almost, since there are only about 150,000 people in the world with this particular cancer Patient: As a patient who has had genetic testing, I don't have a problem with my genetic data being shared for research purposes, if it is anonymised………I think research is really important,
- 19. Value and Impact Engagement Engaged public in genomics, demystify technology Research Qualitative and pedagogic research Individual New skills, new opportunities Innovate Provides a platform to test new pedagogy Marketing Test bed for new courses
- 20. Acknowledgements Development Team Special Thanks to Andy Brass Manchester Centre for Kieran O’Malley Genomic Medicine Fran Hooley Becky Bennett Ang Davies Facilitators FutureLearn Mike Cornell Ross Baxter Idoia Gomez-Paramio Jamie Ellingford Oscar Florez Vargas
Editor's Notes
- Using NGS sequencing technologies we can relatively cheaply sequence a panel of genes relating to a particular condition or disorder, sequence exomes, the protein coding parts of genomes or entire genomes and select virtually for the gene or panel of genes that we would like to analyse NGS technologies that are routinely used in clinical laboratories rely on a technology that fragments and enriches and then barcodes your target of interest. When sequenced this will typically create in the region of GB of data per sample for a gene panel of around 100 genes Hence before further analysis can be undertaken there is a computationally resource intensive step of reassembling all of the fragments back together and ensuring that you have sufficient coverage of your area of interest
- Using NGS sequencing technologies we can relatively cheaply sequence a panel of genes relating to a particular condition or disorder, sequence exomes, the protein coding parts of genomes or entire genomes and select virtually for the gene or panel of genes that we would like to analyse NGS technologies that are routinely used in clinical laboratories rely on a technology that fragments and enriches and then barcodes your target of interest. When sequenced this will typically create in the region of GB of data per sample for a gene panel of around 100 genes Hence before further analysis can be undertaken there is a computationally resource intensive step of reassembling all of the fragments back together and ensuring that you have sufficient coverage of your area of interest
- Using NGS sequencing technologies we can relatively cheaply sequence a panel of genes relating to a particular condition or disorder, sequence exomes, the protein coding parts of genomes or entire genomes and select virtually for the gene or panel of genes that we would like to analyse NGS technologies that are routinely used in clinical laboratories rely on a technology that fragments and enriches and then barcodes your target of interest. When sequenced this will typically create in the region of GB of data per sample for a gene panel of around 100 genes Hence before further analysis can be undertaken there is a computationally resource intensive step of reassembling all of the fragments back together and ensuring that you have sufficient coverage of your area of interest
- Using NGS sequencing technologies we can relatively cheaply sequence a panel of genes relating to a particular condition or disorder, sequence exomes, the protein coding parts of genomes or entire genomes and select virtually for the gene or panel of genes that we would like to analyse NGS technologies that are routinely used in clinical laboratories rely on a technology that fragments and enriches and then barcodes your target of interest. When sequenced this will typically create in the region of GB of data per sample for a gene panel of around 100 genes Hence before further analysis can be undertaken there is a computationally resource intensive step of reassembling all of the fragments back together and ensuring that you have sufficient coverage of your area of interest
- Using NGS sequencing technologies we can relatively cheaply sequence a panel of genes relating to a particular condition or disorder, sequence exomes, the protein coding parts of genomes or entire genomes and select virtually for the gene or panel of genes that we would like to analyse NGS technologies that are routinely used in clinical laboratories rely on a technology that fragments and enriches and then barcodes your target of interest. When sequenced this will typically create in the region of GB of data per sample for a gene panel of around 100 genes Hence before further analysis can be undertaken there is a computationally resource intensive step of reassembling all of the fragments back together and ensuring that you have sufficient coverage of your area of interest
- Using NGS sequencing technologies we can relatively cheaply sequence a panel of genes relating to a particular condition or disorder, sequence exomes, the protein coding parts of genomes or entire genomes and select virtually for the gene or panel of genes that we would like to analyse NGS technologies that are routinely used in clinical laboratories rely on a technology that fragments and enriches and then barcodes your target of interest. When sequenced this will typically create in the region of GB of data per sample for a gene panel of around 100 genes Hence before further analysis can be undertaken there is a computationally resource intensive step of reassembling all of the fragments back together and ensuring that you have sufficient coverage of your area of interest
- Narrative approach - MOOC structured into five distinct areas that emulated the arc of a storyline. Week 1 - the impact of Genomic Medicine in healthcare with and the importance of Clinical Bioinformatics in realising these benefits. This set the scene by introducing the main challenges facing genomic medicine Week 2 neatly framed the practical issues involving Data and Diagnosis. Week 3 - Tools and Workflow, brought the focus to the fundamentals of the bioinformatician’s role and was followed Week 4 - Data & Ethics in week four which covered the wider issues. Week 5 - Finally we returned to the clinical setting in order to apply the learning with an authentic set of case studies in week five. I looped back to previous steps to embellish the narrative, brought in reflective stories from healthcare professionals and reiterated key learning messages in a variety of formats to meet different learning styles
- For some extremely rare conditions proposing/confirming a diagnosis is extremely difficult – particularly as often clinicians may not have seen anyone with a similar presenting phenotype. Therefore patients may set out on what is often described a diagnostic odyssey undergoing may genetic and biochemical tests Social media combined with the internet and rare disease patient groups have in some instances may powerful changes in a positive direction, allowing the sharing of patient’s symptoms and connecting patients with related phenotypes and suspected variants. In this instance parents of children were the same phenottypes were connected and with further genetic testing NGLY1 deglycosylation disorder was confirmed
- Even as the weeks tailed off the personalised scenario still got one of the most likes from the course.
- This generated the most discussion and we were s Data sharing. Lot more open Pushback – Isn’t the anxity