Digital Tools to Access Genetic Information and Navigate Care

Digital tools such as patient portals and other applications give clinicians, patients, and families direct access to individualized health information. In the context of precision medicine, these technologies can help people connect with their genetic test results, understand the implications of findings, and provide them with opportunities for meaningful engagement with health care professionals to discuss results that could help improve their health outcomes.

With an emergence of tests such as whole genome sequencing or larger gene panels that collect information about hundreds of genes or other biomarkers, the size and complexity of information can be overwhelming. Tools that can help make sense of that complexity and provide patients, family members, and health care professionals with a platform to contextualize genetic information could help improve the patient experience, support shared decision-making, and support patient-centred care.

Examples of emerging digital tools to watch include:

• Genetics Adviser (Toronto, Canada) is a digital genetic counselling and education support tool that is intended to guide patients throughout their pathways of care. It provides information to people before testing, helps describe the potential benefits and harms of different tests, and provides a guide to understanding test results and implications of findings, as well as a lifelong record of their genetic results and updates over time.
• ShareDNA (Seattle, US) is a free smartphone application that helps patients upload and share their genetic test results securely with others and learn how to interpret results without the need to input a large amount of personal data.

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