People don’t typically talk about their health with complete strangers, even if the setting seems to fit. Just picture the waiting room outside a doctor’s office. There might be ten or twenty people waiting for their appointments, but chances are that no-one’s making small talk. And even if they are, it’s almost certainly not about the finer points of whatever it is that brought them there that day.
But people want to talk with others about their health. Getting an empathetic response that also contains actual insights regarding treatment is worth its weight in gold.
How do you know who to ask, though? Complete strangers are not an option, and while there are internet forums and support groups dedicated to certain diagnoses, you really don’t know how much else you have in common with other group members. For example, a 20-year-old with Endometriosis may share that same diagnosis with a 50-year-old, but if their profiles are otherwise totally different, it’s unlikely that they will share the same health journey.
But using new technologies, it’s possible to match patients with others with extremely similar profiles in a more data-driven way that embraces a fuller, more holistic view of health. This kind of matching could turn out to be the biggest medical game-changer in decades.
Welcome to the future of personalized medicine.
Building a more holistic profile and making connections
Today, there’s more focus on the importance of what’s referred to as personalized medicine or healthcare. That’s the idea that patients aren’t the equivalent of off-the-rack suits, to be treated according to a one-size-fits-all model. Whether it’s genetic predisposition, environmental factors, fitness levels, or any number of other measures, there’s a real tangible benefit to treating patients as individuals. This can lead to an optimized patient outcome by building up a more holistic profile of the patient and all the factors that are likely to impact their health.
How does this connect to the idea of matching patients with others with similarities? Because, so long as it’s done right, drawing on the crowdsourced experiences of patients regarding their health journeys can make a big difference.
They just need to be matched up to the right patients.
That means pairing patients based not just on diagnosis, but on other factors as well — including (but not limited to) additional health conditions, genetic background, gender identity, lifestyle factors, other demographic information, and more. This act of connecting patients with others who share a similar profile is a new idea referred to as a ‘patient similarity network’.
For years, doctors have known about the importance of matching the right donors and recipients for organ transplants or blood transfusions. However, increasingly, there is evidence emerging about how this same approach can be valuable in all sorts of areas. For instance, a 2020 study looked at individuals with a shared diagnosis of rheumatoid arthritis. Where previously physicians may have treated them all the same, the study discovered — by delving into the data — that there were five distinct phenotypes found in patients — with different symptoms, disease progression, and, crucially, treatments required.
Tapping the power of Big Data, AI algorithms for matching, and the “crowd” accessible via the internet means that it’s possible to truly find patients who are an incredibly close match for others. Given the complexity of the matching process, it’s a challenge akin to finding a needle in a haystack.
Meet your Alikes
Some pioneering companies are already helping bring about the shift. Digital health insights company Alike helps match patients with similar profiles. Alike does this using a similarity network that ingests de-identified data from electronic medical records (EMRs) and algorithmically matches them with a similarity score that compares every two individuals on its system. By drawing on the power and wisdom of the crowd, it’s helping patients to better navigate their own healthcare journeys through leveraging others’ experiences.
Connecting patients with their “Alikes” makes it possible to connect previously isolated patients in an ultra-personalized social network with others going through the same experiences. They are then able to share health tips, insights, lessons learned, and additional information for better managing and coping with conditions.
This pairing process (think of it a bit like the way matchmaking dating apps might pair people of similar ages, in the same geographical location, and with shared interests) can have a profound impact on patients. Just as important as giving patients an idea how their medical journey may progress, pairing them with another similar patient can also mean providing them with the social and emotional support they need on that journey. Hopefully everyone has family and/or close friends to support them, but who better to support a person than someone else who has been through, or may be going through, the same thing they are?
Today’s patients are more empowered than patients at any previous point in history. Along with cutting edge technology and connectivity, legislation like the 21st Century Cures Act, designed to give people more access to their health records, is granting patients more control over their health. That leads to more information, and the ability to make better informed decisions regarding wellness and healthcare.
It’s still early in this particular healthcare revolution. There’s plenty more to be done. But it would be a massive misstep to underestimate how significant this is going to be.
All of us are patients at some point in our lives. This is a paradigm shift that can’t come quickly enough.