Why personalized medicine is not only a biology challenge.
In fact, harnessing all those personalized healthcare data might give rise to a bigger one.
A quick Google search reveals what’s commonly understood about personalized medicine: the tailoring of medical treatment to the individual characteristics of each patient. The concept of personalized medicine is based on the understanding of how one’s unique genetic profile makes someone susceptible to certain diseases. It’s an approach that doesn’t just improve the ability for clinicians to diagnose and treat medical conditions, but it offers the possibility to detect them at a much earlier stage so that it’s easier to minimize harmful side effects and ensure better treatment outcomes.
But if we’re talking about personalizing medicine — which encompasses diagnosis, prognosis, treatment, as well as prevention of disease — it’s not enough to consider genomics. Next to identifying and treating health-related matters, personalized medicine has the potential to completely alter the way we interact with the healthcare system. But for that, we’ll have to look beyond biology.
Our current labels hide the most important stuff
Today, a patient suffering from Alzheimer’s disease goes straight into the Alzheimer category. Someone who has autism — even though many different forms exist — will simply be labeled with autism. And someone struggling with depression will simply be classified as depressed. They’re all people labeled with a particular condition. But underneath that label, a far more complex individual is hidden away. An individual that happens to live in a particular environment, within a particular context, upholding a particular socio-economic status, having attained a particular level of education, being familiar with a particular literacy and having a particular set of habits and skills.
How we develop as a human is shaped by a continuous and dynamic interplay between our biology and our environment. Even though this mostly happens at a young age — when our brains are most responsive to early experiences — , physical and social environmental factors have proven to affect gene expression. But that doesn’t mean that, once our brains have matured, biology alone will be able to paint one’s complete picture. Because next to genetic characteristics, one’s environment might be evolving, one’s context might be changing and one might alter his/her habits. It’s the old-age debate of nature versus nurture. The bottom line? Both genetics and biological influences, as well as behaviorism and one’s environment have a profound impact on the way an individual develops and functions, which has in turn a profound impact on how an individual is involved in the healthcare sector. It would be naive to keep labeling people solely based on their condition.
One’s health journey starts with the right access point
Healthcare products and services mean nothing if they don’t get to the patient, or health consumer for that matter. And where doctors previously acted as the only gatekeepers to pretty much any kind of medical intervention, today’s world offers patients and consumers far more options.
We can assume that patients are far more likely to receive the right intervention at the right time when they find themselves at the right entry point. Imagine a 16-year old farmer’s son who lives in a rural part of the country, a 37-year old female CEO who lives in a penthouse in the middle of a vibrant city center and a 70-year old woman who lives alone in an old apartment building with no family around to support her, all with the same medical condition. Even though they might need very similar treatments, all three personas have different needs and use different channels and interfaces to engage with their respective healthcare services. But most importantly, all three require different access points, whether it’s physically or digitally. For many of us, the healthcare interface is moving into our pockets, for others, it might not be that straightforward. Besides, being mobile and connected can mean very different things for different population subsets.
If one’s health journey starts with the right access point, it continues with the right flow of information. This is where individual context and micro-social structures offer a tremendous opportunity for proper engagement. In most cases, medical issues require particular behavioral changes. But for that to happen, a patient needs his/her information delivered to him/her in the way it makes sense: through the right channel, with the use of the right interface, in the right format and without all the clutter.
Transforming data into personal stories.
The volume of information at hand has turned from a solution to a new problem. Our human bandwith is incapable of keeping up with the amount of information we’re trying to consume. Whereas our society was faced with limited information sharing capabilities up until the nineties, the internet has completely erased those limiting factors. So much so that it’s becoming very hard as a patient or consumer not to be overwhelmed.
That’s exactly where personalized medicine besides its biological facet comes in. We’re in need of a new information filter. One that includes an individual’s context so that the right information can be presented at the right time, in the right way. In many cases, that also means reducing access to information and knowledge to effectively make it digestible and manageable. Each narrative should be considered the glue between the biomedical data points and the environment and context in which they occur. Not every patient will react the same way to the same type of information, nor does every patient need the same type of information.
Say hello to the narrative side of personalized medicine. A facet that will arguably be as important as the actual medical knowledge derived from the upcoming data tsunami. It’s not so much the challenge of getting everyone’s genome sequenced that’s making personalized medicine difficult to achieve these days. It’s making sure that individual patients and consumers are able to properly consume the information that matters about themselves at a certain point in time, so they — and their care providers — can act accordingly.
What this means for innovators
Even when age is the only factor considered, an Accenture study shows that there is a huge difference in the way various subsets of the population engage with the healthcare industry. The millenial population clearly wants to use digital tools to access healthcare, while the baby boomer and silent generation still prefer to rely more on their primary care physician instead. This highly impacts the way innovators should consider putting their new health technologies on the market, as well as which partners they need, how they reach their users and how they design their digital or physical interface.
Innovators focusing on digital health solutions should only focus on the physical interactions for which a digital alternative could serve as an effective substitute. In doing so, they’ll not only better service their specific market segment, but they’ll also service the patients who are in dire need of a physical consultation by helping healthcare professionals in freeing up their limited time.
From awareness to interaction to service, all the way through to coordination and loyalty, every touch point along one’s health journey is an opportunity for personalized medicine. And even though many of these facets will be underpinned by the same digital infrastructure, we can’t fall into the trap of assuming that each patient needs all his/her medical information, and is able to properly interpret it.
We’re on the cusp of a massive narrative challenge, fueled by the ever-growing pile of personalized healthcare data. But with that, we’re also on the cusp of an incredible opportunity to harness the power of storytelling in the way medical interventions are performed and healthcare information is shared. An opportunity that presents a shift from mere transactional services towards an engagement-focused educational health journey that takes into account one’s particular situation, preferences and expectations. It’s about crafting personal stories that are built upon one’s individual context.
Personalized medicine isn’t just a biology challenge. It’s also a narrative one.
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As a disclaimer, the views or opinions expressed in my blog articles are personal and do not reflect upon those of the people or organisations I’m associated with.
