Healthcare is A Community and It Needs a Leader

I've been both an insider and outsider to healthcare for years to be able to form some informed opinions, hypotheses, conclusions about the challenges in healthcare. Where I can claim some expertise is that of being a patient and being with patients as a professional. I've been a patient since childhood (we'll reserve this topic for another day) but suffice it to say that like many people who've been in and out of various healthcare systems, it's complex, chaotic and where we often feel like it was built for a different purpose. On paper, in vision statements cast on walls, the narrative is correct and admirable, in every step, everyone is geared to improve the lives of patients.

But in the real world, patients' views and experiences seem at odds with the system; it feels this way because unlike in Finance, Consumer Packaged Goods or even Technology, Healthcare is a field where the ecosystem does not only have multiple players and layers of stakeholders but where the value exchange amongst themselves are at odds with each other. Payers, Regulators, Industry, Hospital Systems, CROs, Academic Centers of Research Excellence, appear to be there for patients but when services are traced to the ultimate recipients of care, the patients; the connections are often broken, communications are blurred, each encounter with a family Physician, Nurse, Specialist, Social Worker, Pharmacist, Patient Navigator, Clinical Research Coordinator, Patient Advocates, Administrator, Billing, Psychologist, Triage Nurse, Caregivers, Family Members and more become important but broken pieces of a big healthcare puzzle.

The good news is that everyone has shared goals for patients; getting and feeling better are aspirations of all patients. In medical parlance, it's called improving patient outcomes. But the path to impacting the overall well-being of patients, is often long, arduous, time consuming and expensive. It is such because each needs to subscribe to their corporate vision, strategy and commitments which unnecessarily puts a dividing wall between all stakeholders. If I may, I would like to offer a few insights after having interacted with thousands of patients in various channels and formats in years.

It's one thing to have a vision for patients... but someone needs to lead the journey.

None among us has ever been trained to be a patient. While there's deep and thriving education, training and development systems to help us find jobs, build careers or specialized programs in Art, Science and Technology to gain credentials, there has never been a program to prepare patients for an emotionally, physically, socially, economically, mentally - draining experience where there are hopes to demonstrate improvements in biomarkers by being adherent to interventions, treatment plans. The range of activities meant to improve the patient experience ends up in a patchwork. We expect patients to show up, to step in and step up, to rise above the day to day challenges of daily living; to worry less about bills to pay, to get back or not to their workplace, to adhere to medications while continuing to exercise their roles as parents, siblings, workers. To uncover many patient journeys is a humbling exercise; while we always strive to build a more common portrait from overlaps in experiences, the actual day to day existence of patients is unique; it's personal, private and individualized.

So who should lead it? We've always relied on doctors as the "authority" in diagnosis, treatment and inside clinical settings for the right reasons. Doing what physicians and other healthcare professionals do from diagnosis to treatment is winning almost half the battle. But the rest is left to many other stakeholders, often in silos as many have specific accountabilities and functions to fulfill. In most cases, their goals depart from within the healthcare system.

The patient seems to be the most logical choice as leaders, being at the centre of healthcare activities. But how can we equip patients to become leaders of their own health? Self Care is when the patient drives healthcare leadership but it requires a steady, committed, network of community mentors, supporters, trainers, drivers, coaches, educators, researchers, experts whose roles are geared towards helping the patient chart their journey, all the way to the end. It's beyond a relay of services or interventions that gets passed on from each patient interaction with healthcare players, nor the integration/adoption of the most advanced or innovative medical and digital technologies.

It’s a quiet longing for the community to show up to enable, empower and build confidence of the patients to lead a team of healthcare experts, all the way to the very end when everyone is accountable to and responsible for shaping better healthcare outcomes. It’s a different kind of thinking and approach but for the sake of patients, of people whose lives are transformed by illness, it’s worth being a committed partner to the most likely leader, the Patient.