Rachel Iredale*, Cardiff University, Cardiff, United Kingdom Lisa Mundy, Cardiff University, Cardiff, United Kingdom Jenny Hilgart, Cardiff University, Cardiff, United Kingdom Track: Research Presentation Topic: Building virtual communities and social networking applications for patients and consumers Presentation Type: Oral presentation Submission Type: Single Presentation Building: MECC Room: 0.9 Athens Date: 2010-11-30 01:00 PM – 02:30 PM Last modified: 2010-09-21

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Background: In 1998, the Cancer Genetics Service for Wales (CGSW) was established as an all-Wales service for individuals with concerns about their family history of cancer. CGSW offers a range of services such as, risk assessment, genetic counseling and genetic testing. Unlike other health care services, once a patient is referred to CGSW, they can remain with the service for life. Individuals going through the service often have unmet information and support needs and they value access to practical and experiential information from other patients and health professionals. A fundamental challenge is to meet the ongoing needs of these patients by providing easily accessible and reliable information. The internet is one mechanism through which this challenge can be met. Stories may be particularly useful for transmitting information in a form that is palatable and useful. Furthermore, research suggests that those telling their stories also gain a number of positive benefits, such as a feeling of empowerment.
Objectives: The aims of the Story Bank Project are to create a bank of digital stories from people living with cancer, at risk of cancer, or about the journey past patients have made through CGSW, as well as collecting stories from staff working within CGSW. The stories will be freely available for viewing on the All Wales Medical Genetics Service website, which is hosted by the National Health Service (NHS) Wales.
Method: In 2009, CGSW Patient Panels were held across Wales. During these events the Story Bank project was outlined to almost 200 patients and there was an opportunity for patients to register to take part. 75 patients registered an interest to take part and in Spring 2010 further details about the project were sent to these patients. In total, 24 patients, from across Wales consented to share their story. Of these, 19 are female and 5 are male with an age range from 28 to 75 years. Their stories are being captured using a variety of media, including, text, photographs, audio and video clips.
Results: Data collection will be completed by August 2010 and the website will be launched in November 2010. Storytellers have a range of genetic risk levels and many have a past or current diagnosis of cancer including breast, ovarian and colorectal cancer. All storytellers are interviewed to explore their experiences of telling their story. There is a short anonymous survey for users of the website to leave feedback and suggest improvements. Preliminary results will be available for presentation at the conference.
Conclusions: The Story Bank will be used as a web-based resource for patient information and support. The Story Bank will provide patients with access to reliable and easily understandable information. It will allow patients the opportunity to hear the experiences of other patients and the stories will provide essential information about cancer genetics and the issues involved, to newly referred patients, current patients and the general public. The stories will also be used in research and improving service delivery.