About

DECIDE is an electronic decision support tool for genetic counselling that is available on desktop and mobile devices. It was developed in 2016 to facilitate parents' choices for genome-wide sequencing (GWS) [1] following standard guidelines for decision support tools.[2] DECIDE is based on a decision science approach that makes it easier for people to make difficult decisions.[3]

DECIDE informs users of their options to have or decline GWS and of the possible outcomes of their choice. The tool provides clear, accurate and unbiased information about each option and about the risks, benefits, and concerns people may have about undergoing GWS or not. DECIDE incorporates the user's goals, informed preferences, values, and concerns and suggests next steps that are consistent with the user's input.

Evidence for the value of DECIDE was provided by a CIHR-funded clinical trial. [4] This study compared DECIDE to standard in-person pre-GWS genetic counselling. DECIDE was shown to be equivalent to in-person genetic counselling for this purpose and was highly acceptable to the majority of study participants.

DECIDE is continually being evaluated and improved on the basis of its measured performance in a variety of clinical settings. It has been translated into Punjabi and Chinese and is currently being evaluated for clinical implementation in several different specialty clinics and genetic testing scenarios.

Using and Adapting DECIDE

Our goal is to make DECIDE available to genetic counsellors to use with their patients without cost.

The DECIDE tool, including all its content and functionality, are copyrighted to maintain the integrity of the version that has been validated in clinical studies. DECIDE is available for use under a Creative Commons BY-NC-ND license, which means that it must be used as an exact replica, it cannot be changed or used for monetary gain, and it must be attributed to the original developers. DECIDE includes the SURE scale, which has been copyrighted by others but is also available for free use, subject to certain conditions.

If you would like to use DECIDE under this licence you can:

• Use the version built on the open source decideapp.org platform hosted on servers at St. Paul's Hospital in Vancouver, BC. This system has been successfully integrated with REDCap through an Application Programming Interface (API) so that no identifiable patient information is stored on our servers.

• Host your own version of DECIDE on the open source decideapp.org platform.

• Create a replica copy of DECIDE on your own platform (see below for procedures).

We recognize that some adaptations might be required, either for different contexts (e.g., languages, other types of tests) or to permit use on other platforms. We are open to extend the license in these cases but ask that you:

• Engage with us early to understand the process.

• Call your version "DECIDE" with proper attribution. To have confidence that your version will produce the same results that were seen in our studies, our team must review your version for 'similarity' of content and functionality and approve its use. If, in the opinion of our team, it is not sufficiently similar, you cannot call your version "DECIDE" or use any DECIDE content in it.

• Apply the same creative commons license to your version of DECIDE so that any further derivations or use will require the same conditions and similarity review by the original creators.

• Post a link to your version below for others to use.

Finally, we are continuously improving DECIDE and ask that you periodically share de-identified, grouped data on key outcomes of your use with us so that we can learn from your experience. At a minimum, we ask that you share the number of uses (starts and completions), the distribution of total scores and percentage of correct answers on each knowledge question, the percentage of each response and distribution of total scores on the SURE scale, and the percentage of individuals who choose to have in-person genetic counselling after completing DECIDE.

If you want to use DECIDE for any commercial purpose (either as part of a commercial product or integrated into a commercial plan or organization), please contact us for further information.

Current versions of DECIDE

References

1. Birch P, Adam S, Bansback N, Coe RR, Hicklin J, Lehman A, Li KC, Friedman JM. Decide: a decision support tool to facilitate parents’ choices regarding genome-wide sequencing. Journal of genetic counseling. 2016 Dec 1;25(6):1298-308.

2. Joseph-Williams N, Newcombe R, Politi M, Durand MA, Sivell S, Stacey D, O'Connor A, Volk RJ, Edwards A, Bennett C, Pignone M, Thomson R, Elwyn G. Toward Minimum Standards for Certifying Patient Decision Aids: A Modified Delphi Consensus Process. Medical Decision Making. 2014 34(6):699-710

3. Bansback N, Li LC, Lynd L, Bryan S. 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. 2014 Dec;14(1):62.

4. Adam S, Birch PH, Coe RR, Bansback N, Jones AL, Connolly MB, Demos MK, Toyota EB, Farrer MJ, Friedman JM. Assessing an interactive online tool to support parents’ genomic testing decisions. Journal of Genetic Counseling. 2018 Jul 23:1-8.