BRCA Sensemaker
Research type
Research Study
Full title
Making Sense of a very personal decision: A study using Sensemaker® narrative based methodology software to evaluate the patient experience through the multi-disciplinary BRCA Gene Carrier Clinic pathway at the Royal Surrey County Hospital
IRAS ID
279317
Contact name
Tracey Irvine
Contact email
Sponsor organisation
Royal Surrey County Hospital
Duration of Study in the UK
1 years, 7 months, 30 days
Research summary
This is a study exploring the experiences of women who carry a genetic change that puts them at high risk of developing breast and ovarian cancer and how they made their decision whether or not to have risk reducing surgery. Some of these women may have had cancer, but many will not. Their decision is supported through a multi-disciplinary team clinic made up of oncoplastic breast surgeons, gynaecology surgeons, specialist nurses, clinical psychologists and genetic counsellors. The study team are interested in understanding the complexities, challenges and unique individual experiences in how each woman made their decision. The factors the healthcare team think are important may not be the most relevant issues for each woman. The healthcare team are interested in how they can improve this process by understanding from the people who have lived and made these choices.
Each participant is asked to tell their story in the context of how they would share their experience with someone who has recently discovered they too have inherited a high-risk gene that predisposes them to a high breast and ovarian cancer risk. They are asked to impart the information they would most like the person to know as they set out on this pathway of going through the Royal Surrey County hospital genetics and breast surgery clinic.
Each story is captured using a software tool called Sensemaker, which can be accessed through a url link. If they would rather they can record this information in a paper format. By writing or recording their story, participants are then asked to reflect on how this story experience and code/rate the story in relation to the Sensemaker questionnaire (example attached).REC name
London - Stanmore Research Ethics Committee
REC reference
20/PR/0116
Date of REC Opinion
21 Sep 2020
REC opinion
Further Information Favourable Opinion