As scientifically trained professionals, a lot of us sometimes find ourselves presuming that knowledge of facts is itself enough for everybody else to make the “right” decisions. So let’s say this in scientific terms: Facts are necessary but not sufficient. On top of expertise, what’s needed is trust, realness, empathy; and these values are contained in the relationships we build through close cooperation and the way we convey our message through emotional storytelling.
How often, in our own network of friends, family, and acquaintances, have we seen people make “poor choices?” All of us define the “goodness” of a choice subjectively. We may hold strong opinions about relationships, appearance, politics, lifestyle, even food preferences, but can we back those opinions up with hard evidence? In many cases, we can’t. And in those we can, we sometimes maneuver ourselves into a “they just don’t understand” mindset, by presuming that knowing the facts is sufficient to make the “right” choice. We neglect how emotion easily triumphs over intellect, intuition over data, and personality over experience. Think of this next time a friend proudly presents you with a decision that you—overtly or privately—would reject.
Healthcare is a prime example of this: Patients and their loved ones get their information from unverified sources, and their treatment decisions and adherence are based on personal beliefs at least as much as on clinical data or recommendations from their doctors. In the medical field experts are sharing decision-making power with competing forces. This is the reality we live in—pessimists may think this undermines medical science, and optimists would say it’s simply patient empowerment at work.
The truth is: The paternalistic model, in which doctors prescribed and patients “complied,” was never a functioning proposition. If we take our pledge to act in the patient’s best interest seriously, the answer to increased complexity is not less, but more patient empowerment. If we hold that expert knowledge and competence needs to be guiding treatment decisions, then it is our duty to share that knowledge and to convey it through channels that connect with the audience. It is not so much about pitting emotion and intellect, intuition and data, and personality and experience against one another. It’s about ensuring that the message we believe in resonates with our rational as well as our emotional selves. To achieve this, engagement between industry and patients as well as among patients themselves is key.
Building Bridges with Industry-Patient Engagement
There are so many things we can’t do all by ourselves. The question of adherence is the most basic illustration of this: As Everett Koop famously said, “Drugs don’t work in patients who don’t take them.” Life sciences companies, doctors, and payers can’t be treatment adherent on their patients’ behalf. What we can do is support adherence, make it easy, explain the benefits, and be part of the solution. In other words: Engage and cooperate and engage. Direct engagement builds bridges. It opens the way for dialog. It helps us understand what we can do better and gives us an opportunity to prove that patient outcomes are our priority. It helps patients lose prejudices against the life sciences industry and have their voices heard. Engaging directly with patients is no longer optional. It’s a requirement.
For engagement to have this effect, it’s important not to just focus on the easy stuff. It’s not about launching another website or app or sending out a questionnaire. All of that can be useful, but it’s not the point. Patient engagement is about actually seeking to spend time live, one-on-one, with patients. That’s when the magic happens. That’s when you discover what goes on in the community. That’s when a relationship starts to grow and the spin and the buzzwords start to be replaced by something that’s real and meaningful. Our experience and knowledge may be what qualifies us to speak about specific diseases, but our personality is what unlocks the door to the hearts of those affected. That personality only gets a chance to shine through when we engage.
By the way: In the interest of patients, cooperation should of course encompass all stakeholders—life sciences companies, patients, agencies, payers, regulators. Every parent knows that nothing is more frustrating than when two kids share the same goal but can’t get along in the sandbox. Personal egos must not supersede shared interests.
Completing the Message with Patient-to-Patient Storytelling
While medical decisions should be based on scientific knowledge, medical best practice, and experience, we’re making a mistake if we rely on these things alone to improve patient outcomes. As much as we may wish it did, science does not sell itself. Patient adherence is influenced by so many other factors. Chief among those: Patient recall, patient understanding, and patient motivation. The facts are what counts, but how can the facts count if the patient forgets to take the pills? How can the facts count if the patient didn’t understand how exactly to administer the drug? How can the facts count if the patient has simply given up? The facts can only count when we ensure that the message is received, understood, and retained. The facts can only count when the patient cares.
People care when they are talked to directly, in their own language, with respect and empathy. That’s why other patients and caregivers are always the most credible and powerful spokespeople for patients and their loved ones. Your peers are the ones who understand your emotional journey the best. And it’s through your emotions that you connect with others and find motivation. Emotions are not the enemy of facts. Emotions and facts are allies if they align with one another. Let’s use a sports analogy: By establishing the facts, we’re defining the rules of the game; by bringing emotion, we actually start playing.
Behavior modification through cooperation
The attempt to achieve health outcomes for patients, rather than with patients, is bound to fail. We will never modify behavior by only pointing to the science. If science sold itself, our industry would have long adopted behavioral science to improve patient outcomes. The fact that we’re only now starting to do so proves the point that it takes more than knowing what’s right to do what’s right. It takes feeling it. It’s time for real collaboration, for a sustained effort to hear the patient voice and to amplify that voice for the benefit of all. It’s time to do things not with patients in mind but with patients involved.