Telling stories, Understanding Real Life Genetics

Telling Stories, Understanding Real Life Genetics is a free, award-winning website that has been developed to support health professional education in genetics. Real stories have been gathered from across the UK from individuals with, at risk of, or caring for someone with a condition that has a genetic component. Through these stories, the site aims to enable practitioners to see the impact that genetic conditions can have on the lives of individuals and families and in turn encourage them to learn more about genetics as it relates to everyday practice. Each story is available to read online or print off and video clips are available for some stories. Additional information and activities are provided for each story to support their use within teaching and learning. Expert commentaries from experienced health professionals or lecturers are also available, providing additional perspectives to supplement the stories for educational purposes.

Background

Work began on the project in April 2005 and initial funding was provided by the Wellcome Trust to support the collaborative team from the University of Glamorgan, University of Plymouth, Genetic Interest Group, and the National Genetics Education and Development Centre to develop the site for nurses, midwives and health visitors.

The site was launched in June 2007 by broadcaster and journalist Jon Snow and is hosted by the NHS National Genetics Education and Development Centre.

Achievements

It has been very well received both nationally and internationally, and is accessed across the world. Since the beginning of 2009, the website has had more than 335,000 page views from over 86,000 visitors in 173 countries. In 2008, funding the Wales Postgraduate Deanery enabled the site to be expanded for medical education.

In 2009 Telling Stories, Understanding Real Life Genetics was given the “Best Use of New Media award” by the Association of Healthcare Communicators.

To date over 100 stories have been collected and the Telling Stories team were delighted when the 100th story was published on the site in December 2011.

Members of the Telling Stories team at the 100th story celebrations. Left to right: Dr Juping Yu, Mr Kevin McDonald, Dr Rhian Morgan, Professor Maggie Kirk and Dr Emma Tonkin.


On her experience of taking part in the project, our 100th storyteller Siobhan said:

“I was really pleased to be able to tell my story; it’s a good way to raise awareness of people like me trying to live a full life while dealing with complex problems (in my case ankylosing spondylitis and type-two diabetes). Too often I find that health professionals only see/deal with the part of you that interests them and not a whole person. The Telling Stories resource is a good way for us ordinary people to be ourselves and hopefully that is what the health professionals will see as well as understanding more about genetics.”




In May 2013, Professor Maggie Kirk was awarded the Betsi Cadwaladr Scholarship Foundation award for the Telling Stories Understanding Real Life Genetics project at the Chief Nursing Officer for Wales Showcase Conference in Cardiff. The award will be used to develop a story-based educational package on the use of stratified medicine in cancer care which will be housed on the Telling Stories website as the Betsi Cadwaladr story collection.

Feedback on the resource has been overwhelmingly positive. Below is a selection of quotes from storytellers and website users:

  • “I enjoyed the experience and it will be even more rewarding if it helps in the training of healthcare professionals. In turn this will help the public” Storyteller
  • “Bright, user friendly, well laid out site. The information that I did access was relevant, informative and related well to the theme it was linked with; handy tips for reflection are useful for teaching purposes” Educators’ Network 13
  • “We feel that this website could make an important difference to the training of professionals and its application and use should be widened to include doctors at ALL levels” Storyteller
  • “Any students I have in the future will definitely be shown this whenever appropriate” Educators’ Network 80
  • “What an incredible resource! Thank you so much!!” Clinical Nurse Specialist, Ohio USA
  • “One of the best sites I have ever visited. Clear, concise and easily navigable” Storyteller

To find out more about the project go to the Telling Stories website or contact Project Officer Dr Rhian Morgan: tellingstories@southwales.ac.uk

You can also provide comment on the resource via the online feedback form or evaluation questionnaire

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