A few weeks ago, I helped host the inaugural “Know Your Risk” Forum, a global event series discussing the importance of genetic testing and risk assessments for women. In partnership with the global patient advocacy agency We Humanise Health and Genetype (Genetic Technologies LTD), we welcomed policymakers, CEOs, and renowned physicians to Pasadena, California, to discuss this hot topic in women’s health.
While planning the forum, I found a lot of parallels with the theme of “Know Your Risk” and my work building at Ethos. Ethos is a tech-enabled platform helping individuals and their care team manage alcohol across its spectrum of risk. A lot of our work focuses on developing early detection and intervention pathways to address substance misuse before addiction.
In this line of work, I have become well familiar with finding ways to have conversations about people’s health that they seemingly want to avoid- as a patient, advocate, and startup operator. I have a lot of personal insights/curiosities about risk assessments and the overall prevention space:
What are risk assessments?
The purpose of genetic risk assessment is to identify individuals at elevated cancer risk who may benefit from genetic testing, additional screening, or preventive interventions.
What surprised me was learning that not all risk assessments are the same, which is crucial to know if you discuss risk assessments with your doctor or if they recommend one to you.
For example, Genetype’s risk assessments focus on polygenic risk scores (PRS), which consider the combined effect of many genes, each contributing a small amount to the overall risk of developing a condition. Their integrated risk model combines polygenic risk with other factors such as demographics and clinical measurements. To put this into context, BRCA1 and BRCA2 genetic testing is considered monogenic because it only looks at mutations in those specific genes. However, integrated polygenic risk assessments can identify 2-5x more at-risk adults than traditional risk assessments alone.
Risk assessments can also be conducted for other conditions, such as coronary artery disease, type 2 diabetes, and even mental and behavioral health issues like substance/alcohol use disorder. For example, at Ethos, we are focused on developing preventive risk assessments for alcohol misuse, a healthcare category that, despite its $24 billion in direct spending, lacks a clinically robust framework for screening and intervention.
Simply put, risk assessments help you identify health risks so you can modify your behavior early on and invest in preventive treatments.
Employers, as payers in the healthcare system, play a crucial role in the adoption and implementation of risk assessments. For example, the Biden Administration just launched partnership with large employers such as United Airlines, Gilead, and Amazon, through the Biden Cancer Moonshot initiative to expand employee programs for cancer prevention and early screenings. Other payers and providers also benefit from risk assessments because the data allows them to categorize risk and allocate resources most effectively, targeting populations that require the most attention.
You received your Risk Score, Now What?
Let’s say after learning about all the evidence and policies, everyone completes testing. How many of us would actually change our behavior and lifestyle after knowing our risk?
One of my favorite panels at the Know Your Risk forum was called “Patient Voice at the Center,” particularly because of Matthew Zachary’s (Co-Founder of Stupid Cancer and Brain Cancer survivor) commentary. When asked why health systems are not doing more to adopt preventative solutions like risk assessments, I assumed panelists would begin to talk about the mixed financial incentives that burden health systems. Instead Matthew’s response stunned me:
“Risk aversion is embedded in our DNA. Only those who’ve been pre-shaken to their core and grounded by a relatable life-altering experience does that congenital fear wane. Are society and culture ready to embrace the idea of “pre-cancer” or a different way to think about prevention and risk reduction? This is a consumer issue more than it is a clinical one. Science will not solve for this. An understanding of cultural anthropology might.”
While I do not think people should adopt restrictive behaviors or live in fear after knowing more information about their health, I do agree with Matthew. Western culture devalues our health until we are deemed “sick.” Do not let Goop and brands alike fool you into thinking they care about Ayurveda and Eastern Medicine. In the U.S. improving our health is synonymous with improving our (economic) performance. It quite literally is the business model of many health and wellness companies who sell to employers under the premise of improving employee “productivity.”
With all that said, I am not a pessimist! I would not be building in healthcare, let alone behavioral health, if I was one. One of the earliest insights we gained while launching the direct-to-consumer (DTC) “mindful drinking” version of Ethos was the importance of meeting people where they were at. For example, our decision to market our app as a social app instead of a habit tracking one allowed people to answer truthfully when it came to screening for Alcohol Use Disorder Identification Test (AUDIT-C). In fact, our average user had an AUDIT-C Score of 6.8, which means they could be already showing early signs of liver damage.
As a healthcare company, it was not enough to just provide individuals with information about their risk; we had to link them to necessary care as well.
In the B2B SaaS version of Ethos, assisting physicians in addressing patient behavioral change has underscored the importance of establishing clear next steps. Risk Assessments are created for us to take action based off of information, it is not enough to just know your risk. We need to feel supported and have the guidance to take action after as well.
Having conversations no one really wants to have.
I know this is easier said than done. I still remember how reluctant I was to push for more testing. I wanted to desperately believe everyone around me was right and that I really was fine. But ignoring the situation does not change the circumstance. It is still pretty fucking scary.
As Matthew said, only those “pre-shaken” understand their risk. Otherwise, no one really cares about what their middle school health class taught them or for that matter what AlcoholEdu had to say. Health Education is often boring and uninspired. This is why I am constantly looking for new, innovative ways to engage people.
At the Know Your Risk Forum, I played around with a few different ideas on how to design an immersive experience for people to meaningfully interact with.
Designing it was really fun for me, but I’ll be honest also very frustrating as I went back and forth on the best ways to meet people where they were in terms of knowledge and willingness to listen.
Overall, it has been really rewarding to be able to design so many different types of experiences for people to better understand their health. Whether it is through building Ethos, planning a “High Tea” forum, or writing in this substack. :)
Know Your Risk, Self-Guided Journey (chronological order):
