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November 5, 2012

Genomics News
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» Telling Stories Understanding Real Life Genetics journal article published

The Glamorgan-based Telling Stories Understanding Real Life Genetics project team, led by Prof Maggie Kirk of the Genomics Policy Unit, were delighted to receive confirmation that our journal article An objective approach to evaluating an internet-delivered genetics education resource developed … Continue reading

February 7, 2011

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» Just what the doctor ordered – Telling Stories continues to grow!

Telling Stories Understanding Real Life Genetics has expanded to incorporate educational content for doctors. Initially developed for nurses, midwives and health visitors, the stories on the website – which are from individuals with, or at risk of a genetic condition, healthcare professionals, family members or carers – have now been mapped to learning outcomes in genetics for General Practitioners and Medical Undergraduate Students with support from the Wales Postgraduate Deanery for Medical and Dental Education at Cardiff University.

In addition to this new content, the recently revised nursing competences in genetics (Fit for Practice in the Genetics/Genomics Era: A revised competence based framework for nurse education; Kirk et al Preliminary Report, April 2010), which were reviewed and updated last year by a team of experts led by Professor Maggie Kirk (Leader Genomics Policy Unit, HeSAS, and Lead Professional Specialist for Nursing Professions at the NHS National Genetics Education & Development Centre), are now available on the Telling Stories website.

Three new stories have also been published this month; the first is from a nurse, Ruth, specialising in the genetic condition Niemann-Pick disease, the second from a storyteller, Amelia, who describes her expereinces of living with the genetic condition Neurofibromatosis, and the third from Jenny, who describes what it is like to live with two different inherited conditions, facioscapulohumeral (FSH) muscular dystrophy and maturity-onset diabetes in the young (MODY).

New video clips are also available to accompany David’s story about living with the rare genetic condition Von Hippel Lindau.

For enquiries or more information on Telling Stories, please email tellingstories@glam.ac.uk

October 6, 2010

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» Telling Stories tees off at The Belfry!

With Ryder Cup fever sweeping Wales and the UK this week, the Telling Stories team kept up with the golfing theme (minus the dodgy golfing knitwear!) as they visited the famous Belfry Golf Club in the West Midlands to give a ‘masterclass’ on the Telling Stories Understanding Real Life Genetics website to the Association for Healthcare Communications and Marketing conference yesterday. The invite to give the presentation came as a result of the ‘Best Use of New Media’ award that the Telling Stories website won at last year’s AHC conference.

The session, which was attended by delegates from a wide range of backgrounds within healthcare communication and marketing, used Telling Stories as a case study to illustrate how online storytelling can be used as a powerful and effective means of engaging and educating healthcare professionals. As well as giving the audience an overview of the project from its inception to the present, attendees were invited to participate in some group work on both storytelling in general, and using some of the stories featured on the website. From the feedback received on the day, it seemed the session was well received by those attending, who commented that they found it enjoyable and engaging and felt that it provided some good ideas for others wishing to use the storytelling as an educational or training tool. Whilst the masterclass might not have quite reached the frenzied excitement of the final afternoon of the Ryder Cup, like Graeme McDowell’s final putt on the 17th on Monday, it went down well! :)

August 3, 2010

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» Experts comment on Telling Stories

Telling Stories, Understanding Real Life Genetics draws on real life stories from people with or at risk of a genetic condition, or those caring for them. Told in the storytellers’ own words, the stories are mapped to genetic education frameworks for healthcare professionals and are supplemented with teaching and learning activities and links to further information. Two news stories were added to the site last month: Patrick’s account, of living with sickle-cell disease and Caroline’s story of her son’s Tuberous sclerosis.

The Telling Stories team also invites comment on aspects of the stories from professionals with expertise across healthcare practice. Commentaries provide additional perspectives to supplement the stories for teaching and learning. Those recently added include: Inherited bowel cancer – Kathy Calzone provides a US perspective to Paul’s Familial Adenomatous Polyposis (FAP) story, Sandra Hall a CF specialist nurse comments on Rachel’s cystic fibrosis story, Merlyn Glass ,a Genetic Nurse Counsellor from Johannesburg, offers comment on Down syndrome from a South African perspective, Dr Sue Clark ,a consultant colorectal surgeon, comments on Diane’s FAP storyfrom a surgical perspective, Dr Andrea Edwards Lead Genetic Counsellor (All Wales Medical Genetics Service), reflects on Karen’s tuberous sclerosis story and discusses the different perspectives of reproductive decision making and the choices available during a pregnancy when a genetic condition is suspected in a family, and Dr Stephen Hailey offers a GP’s perspective on several of the stories.

For any enquiries about Telling Stories, please email project officer Rhian Morgan

» How often do you cry at conferences?

My career spans well over 30 years and in that time I’ve been to numerous scientific/health conferences and listened to eminent speakers present leading edge research. I’ve been impressed by facts, figures, charts, and fabulously colourful diagrams (molecular geneticists seem to excel at these). From all of these, probably three stand out. Two because complex material was presented so clearly we were all able to appreciate the implications and value of what was being achieved. The other was because I was so bitterly disappointed that the keynote leading lecture by the very eminent scientist was completely over the heads of most of the audience (even the molecular geneticists struggled) and I learnt nothing (except a reminder of the importance of avoiding jargon and PowerPoint slides that no-one more than a metre away can read…).

Last week I found myself at another conference, on Alzheimer’s disease hosted by the Faculty of Health, Sport and Science and Grwp Gwalia. We had the facts and figures (that there are currently around 38,000 people in Wales with dementia, and this figure is likely to rise to 48,000 by 2021) alongside some interesting presentations on initiatives to provide care for patients and families affected by the condition. But what I think will really have moved the audience to try to ‘do their bit’ for such families was the story told by Peter Oldacre, husband and carer of Ann. Peter showed a brief video of Ann’s life since her diagnosis just a few years ago, narrated by her daughter. The story was told simply, sincerely and with occasional humour. I was not the only person wiping away tears as Peter’s story drew to a close. Good quality evidence is of course crucial in informing policy. But the human face of that, as told through real life stories, is what I think can really make a difference in getting people to engage with the evidence. I shall remember Peter’s story, and his courage in telling it, for a long time.

August 2, 2010

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» Tell your story about Telling Stories - students wanted to help with genetics film

Are you a healthcare student who has used the Telling Stories, Understanding Real Life Genetics (www.tellingstories.nhs.uk) website to learn more about genetic conditions and how they can impact on everyday life as part of your studies? If so, we’d love to hear form you.

We are looking for one or two healthcare students who would be willing to be interviewed about their experiences of using Telling Stories in their education as part of a film that Public Service Management Wales are making for their Storytelling Centre for Leadership project, in which they would like to highlight Telling Stories as an example of good practice. Filming is likely to commence within the next 2 to 3 months. Anyone who is interested and would be willing to help, please email Rhian Morgan, Telling Stories Project Officer or call 01443 483027

March 25, 2009

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» New Project Officer

Hello, I’d like to introduce myself, I’m Rhian, the new project officer for Telling Stories. I’ll be working on the website, uploading more stories, collecting new ones and extending the range of professional groups covered to include medics. Please feel free to contact me if you have any queries regarding the project, or would like to find out more about how Telling Stories is of benefit to health professional education. You can contact me using the details below.

Telling Stories Understanding Real Life Genetics

Rhian Morgan

Telephone: 01443 483027

June 30, 2008

Genomics News
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» Telling Stories to form part of US nurses' education resource

I’ve just returned from a very positive meeting in Bethesda, US (not North Wales) with leaders in genetics education from across the US. The aim of the meeting was to develop a toolkit of education resources to support the genetics/genomics competences for US nurses. Telling Stories was swiftly adopted as a very useful component of the toolkit, and it seemed that those who knew of it were already using it, and those that didn’t clearly saw its value.

The meeting itself was held at the National Institutes of Health – a very impressive campus of 27 institutes, with a ~$30billion budget. Just think what the GPU could do with that!