How to make genetic testing empowering, not anxiety-inducing
More power, more questions
The expansion of genetic testing is giving patients more decision-making power than ever before. As patients, we can now open a browser, order a genetic test, and get results delivered to us online without having to engage with our physicians or physically visit a lab.
But the results don’t provide a definitive diagnosis. We learn our relative risk of developing a certain condition, but what should we do with that information? Who should we go to for guidance? Should we see a primary care physician, a specialist, or a genetic counselor? Should we do our own research? What if we can’t get clear guidance on how to reduce our level of risk? And will our insurer consider this a pre-existing condition?
Patients need tools to interpret data
People may be hesitant to learn their risk status if they don’t know what to do with the results or how to mitigate risk. Providing tools to help patients better interpret results can help justify these tests and deliver better outcomes. Digital tools like Vida Health’s personalized digital coaching tool, which pairs users with their own health coaches, can help educate and empower patients.
More data equals more value
Genetic test results aren’t meant to be viewed in isolation; they should be considered in the context of individuals’ lifestyles, family history, and other factors influencing their health. Test results can become more valuable if they’re combined with de-identified data from other patients, aggregated with other sources of data, and analyzed using the latest advances in machine learning.
How do we make this happen? We can start by developing clinical decision support tools to help physicians better understand how risk results impact individual patients and their care. This is especially important for community-based physicians who lack both the time and resources available to many academic clinicians. Tools need to be simple to use and integrated with existing technology platforms.
Physicians shouldn’t forget the human touch
Incredible advances in technology are enabling us to amass new data and generate more insights about our health than ever before. However, a human touch is still essential to understand and communicate results. Artificial intelligence can look at a plethora of data inputs and draw conclusions, but it can’t look into a patient’s eyes and give them a smile of reassurance. When people receive test results indicating that they’re at elevated risk, they feel vulnerable. They want empathy and trust from another human—not a robot. Physicians need to provide the human element that technology can’t.
Individuals need individual treatment
To get the best outcomes, physicians need to understand the whole patient—test results, financial situations, support systems, and other potential barriers to treatment. On one end of the spectrum, there are Medicaid patients who can’t afford the bus fare to see their physicians. On the other end, there are busy executives who can’t find the time to make an appointment. Both scenarios present challenges to delivering the best possible care. Treatment must account for all of these variables to be truly personalized and effective. The tools we build in the future should enable us to combine genetic data with other information about the person, to make the most informed decisions.
Advances in genetic testing are bringing up challenging questions about how to interpret results and what to do for treatment. But with these challenges comes an opportunity for people to become more involved in their own care and work with physicians to make better decisions. As an industry, we need to continue developing data management, analytics, and communication tools to get more information to physicians and patients and help improve everyone’s healthcare.
Suzy Obst is a solution principal in Slalom’s San Francisco office. Suzy has been leading strategy and innovation work in life sciences, healthcare, and wellness for over 20 years. Follow her on LinkedIn.
Suzy is no longer with Slalom.