Innovation
Telling Stories Understanding Real Life Genetics (http://www.tellingstories.nhs.uk) is a freely-available education resource for healthcare professionals launched in 2007. It sets stories from patients, carers, family members and professionals within an education framework that makes clear the links to professional practice and maps them to competency frameworks and/or learning outcomes for nurses, midwives, medical students and GPs. The accompanying toolkit of resources includes expert commentaries on the stories and supporting activities. Video clips can be downloaded and the story and toolkit can be printed as a PDF document.
The resource has been developed through collaboration with Plymouth University, Genetic Alliance UK and the NHS National Genetics Education & Development Centre, who currently host the site.
What prompted innovation?
We knew from our own research and that of others that provision for health professional education in genetics in the UK (and elsewhere) was patchy and inadequate. Health professionals themselves lacked confidence and competence in genetics and a significant barrier was the perceived lack of relevance of the subject to their clinical role. There was a dearth of resources for nurses and midwives that made the relevance of genetics to their practice clear.
We were also aware (from our own research and personal experience) of the power of stories in ‘getting the message across’, but with many institutions either utilising bioscientists to deliver teaching, or with sessions delivered by health professionals who themselves were not confident in the application of the science to clinical practice, we knew that many lecturers did not have their own genetics stories to draw on. With initial funding from the Wellcome Trust, we started to collect stories to set in an education framework so that lecturers could use them in their teaching, and students could also access them to help them understand the impact of genetics on the lives of individuals and families and hence its relevance to practice.
What makes innovation different?
When we started developing the resource, there were very few websites using patient stories. They have since become much more popular, but what makes our resource different is the education framework around the stories. Visitors can search for stories through a range of themes, such as genetic condition, professional role, mode of inheritance, issues raised, competency or life stage.
They can view the story on-screen, watch or download video clips or print the story as a PDF. Each story is accompanied by a toolkit of resources, including points for reflection, activities (for individuals or groups) and signposts to other resources. There is also a glossary and a section that makes explicit how the story relates to professional practice.
The site continues to evolve and further development is underway to add more facilities to the site.
Changes in practice
A formal, preliminary evaluation was conducted in 2008 to ascertain educators’ perspectives on relevance and usefulness of the site. These were positive and the site was clearly found to be useful. One educator interviewed commented:
‘It just makes it real, because otherwise a lot of the stuff we’re doing is just anatomy and physiology, and although you bring in aspects of care, I think if the students can see there’s a real person… then it does make it live more (Mr H)’.
Although we need to conduct a follow-up, wider-scale survey, we believe it has impacted on education practice and that educators and students are using the resource for teaching and learning. This is indirectly evidenced from our analysis using Google Analytics, that the site is very widely used and that videos and PDFs are downloaded.
There is a growing awareness of the importance and relevance of genetics in education and clinical practice. What we feel is important is that, once educators and students have made the connection with this, they have practical support to facilitate the transition to engaging more fully with genetics.
‘Thank you for this wonderful website… it has been very helpful as we begin to educate our nursing staff about providing ‘personalized health care”
Ohio State University, Medical Center
Impact
Originally developed specifically for nurses, the site was recognised early on for its excellence in healthcare communication, being awarded ‘Best use of new media’ in 2009 by the Association of Healthcare Communicators. The successful format has been expanded to incorporate other health professional groups and in turn to support multidisciplinary care. One story has been selected by NICE for inclusion in an education package to support their clinical guideline on the management of acute painful sickle cell episode. In 2013, the team was awarded the Betsi Cadwaladr Scholarship Foundation Award.
Evaluation of the resource has been integral to the project and informs its continuing development. In 2012, over 19,500 people visited the site, and an evaluation of visitor demographics was published in 2012 (see below). Eighteen of the top 25 referring sites are education/ health establishments in the US, UK and Netherlands. The site is used by nurse educators, doctors, users of patient support groups and the general public, in the UK and overseas (particularly the USA, Australia, Canada, India and Netherlands). Our Facebook and Twitter sites help engage a wider audience. Importantly, feedback from our contributors details the personal benefits that they have felt in telling their story. We also receive unsolicited testimonials, such as in an email from a US nursing student: ‘This website is a great learning tool for nursing students. Thanks so much’.
Dissemination
The resource has been very widely disseminated through national and international conferences, blogs, websites, a Facebook site and Twitter account and through publications (see below). The stories are also use to support other publications. A forthcoming series of articles in Nursing Standard, each looking at one of the eight nursing competencies in genetics/genomics, uses quotes from the stories to illustrate the issues raised and to help promote understanding.
Kirk M, Morgan R, Tonkin E, McDonald K, Skirton H (2012) An objective approach to evaluating an internet-delivered genetics education resource developed for nurses: using Google Analytics™ to monitor global visitor engagement. Journal of Research in Nursing 17 (6):557-579
Tonkin E, Calzone K, Jenkins J, Lea D, Prows C (2011) Genomic education resources for nursing faculty. Journal of Nursing Scholarship, 43 (4), 330-340.
Kirk M, Tonkin E, Skirton H, McDonald K, Cope B, Morgan R (2011) Storytellers as partners in developing a genetics education resource for health professionals. Nurse Education Today 33: 518- 524 (Wellcome Trust funded open access at: http://download.journals.elsevierhealth.com/pdfs/journals/0260-6917/PIIS0260691711003200.pdf)
Morgan R, Tonkin E, Kirk M (2009) A chance to be heard: what motivates people to tell their healthcare stories? Interconnection Quarterly Journal 2(5) Online journal available at www.icwhatnew.com