What is DECIDE ?
DECIDE is an online integrated e-learning and decision support tool designed to help people who are making choices about whether to have genome-wide sequencing (GWS; exome sequencing (ES) or genome sequencing (GS)). It was created as an innovative solution to address several barriers that limit access to genetic counselling services- such as geographical distance, time constraints, and availability of trained genetics professionals. Being an online tool, DECIDE is accessible anywhere there is an internet signal and can be used on both desktop and mobile devices. It can be completed on users’ own time, at their own pace. The language used on DECIDE is intended to be accessible and the use of technical jargon is limited. DECIDE begins with education modules targeting various subjects related to GWS: what is the genome, how does GWS work, the types of results, and incidental findings. Next, DECIDE leads users through an exercise to weigh different values related to receiving the test. Users are asked to weigh the importance of different issues to them, then asked to make a decision about GWS in light of these values. DECIDE concludes with a final series of questions to make sure users are comfortable with the decision they’ve made. Structuring the decision-making process in this way ensures families make an informed and values-based decision that safeguards against decision regret down the line.
- GenCOUNSEL research aim with DECIDE trial
Activity 3 of GenCOUNSEL focuses on developing, evaluating, and enhancing methods of delivering genetic counselling services. DECIDE is an innovative mode of genetic counselling delivery that can supplement or even replace traditional in-person appointments. Previous research studies on DECIDE have supported the efficacy of the tool to deliver information and aid decision-making for families considering GWS. GenCOUNSEL investigators are currently working to further evaluate how well families feel DECIDE works as a decision-aid tool. We are working with two clinics at the BC Children’s Hospital that complete high numbers of GWS for their patient population to recruit families to our study. Another outcome of this project is to evaluate the time and cost savings of using an online decision-aid tool for clinical genetics services.
- Translating DECIDE
To meet the needs of a larger portion of families in B.C., we decided to translate DECIDE into Punjabi and Simplified Chinese. About 10% of the British Columbian population speaks Punjabi or Mandarin at home or as their mother tongue, and a significant proportion of these individuals may have limited English proficiency. To translate DECIDE, we underwent an iterative process involving multiple translators, feedback from families, and several revisions. We started by translating all of the text into the target language (forward translation); then had a different translator translate the text back into English (back translation) to check for any differences in meaning. Next, we reached out to bilingual people we knew who had experience with GWS and asked them to test the translated decision-aid. Afterward, we asked them some specific questions about their thoughts on the website. This pilot testing stage allowed us to make sure the translated DECIDE was both culturally and linguistically appropriate for our target audience.
- Publications about DECIDE
Birch P, Adam S, Bansback N, Coe RR, Hicklin J, Lehman A, Li KC, Friedman JM. (2016). DECIDE: a decision support tool to facilitate parents’ choices regarding genome-wide sequencing. Journal of Genetic Counseling. [link]
Adam S, Birch PH, Coe RR, Bansback N, Jones AL, Connolly MB, Demos MK, Toyota EB, Farrer MJ, Friedman JM. (2019). Assessing an Interactive Online Tool to Support Parents' Genomic Testing Decisions. Journal of Genetic Counseling. [link]
Bansback N, Li LC, Lynd L, Bryan S. (2014). Development and preliminary user testing of the DCIDA (Dynamic computer interactive decision application) for ‘nudging’ patients towards high quality decisions. BMC Medical Informatics and Decision Making. [link]