StoryBank

Description:

StoryBank is an online collection of narratives from individuals with a family history of cancer and staff at the Cancer Genetics Service for Wales. The stories are organised into 10 key topic areas, covering issues such as: family history questionnaires, risk categories, genetic counselling, genetic testing, living with cancer. All stories are available as audio-visual files and you can also download the transcripts. The site was designed to provide information and support - allowing you to hear about experiences of other people. Links to useful information are also provided, targeted at UK residents.

Service URL:

http://www.cancergeneticsstorybank.co.uk/

Agency Responsible:

Cancer Genetics Service for Wales (CGSW).

Details

Format:

Website.

Intervention Type:

Educational (primarily educational material or psychoeducation).

Course Length:

Long (more than 5 modules).

Support Option:

No support.

Target Audience

Primary Category:

Physical Health. Cancer (people with a family history of cancer)

Target Audience:

Adult.

Language:

English.

Access

Fee:

Free.

Access:

Open: No registration required.

Contact Details:

rachel.iredale@tenovus.org.uk

Research evidence

Research Trials:

0

Research RCTs:

0

Outcome Summary:

No research evidence is currently available relating to the effectiveness of the site. The papers cited below detail the development of StoryBank and the involvement of people affected by cancer. A user evaluation survey is also incorporated into the site - and findings will be reported in the future.

Recommended rating, reviewer 1:

Recommended rating, reviewer 2:

Read more about Beacon's Smiley Rating System.

Research paper citations

Additional references:
Iredale, R., Mundy, L. Hilgart, J. (2011) An online resource of digital stories about cancer genetics: qualitative study of patient preferences and information needs. Journal of Medical Internet Research. 13(3): e78.

Iredale, R., Mundy, L., Marsden, D., Murray, A (2011) Patient involvement at the Cancer Genetics Service for Wales: meeting the long-term information and support needs of people at risk of inherited cancer. Patient Education and Counseling, 84(2): 280-1.