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What is patient-engagement?

Updated: Apr 4, 2023

The term patient engagement has been around for decades and has exploded in healthcare over the past 15 years with the rapid rise in chronic ill health across the world, but what does it really mean and do we fully understand it?

As a founder of a patient engagement organisation spending most of my time with patients, filming, narrating, understanding and connecting patients, working regularly with health companies, charities, brands and governments, I'm aware of the growing focus on patients failing (or refusing!) to engage with their health, as well as the myriad of processes, "solutions" and potential pathways to overcoming their problems. This surge of interest in the subject - particularly in the wake of the pandemic - made me want to dig a bit deeper into what we do and to share something I feel is important.

In light of the world’s intense health focus in 2021, I want to begin by removing the word 'patient' and to refer instead to human engagement. If we fail to engage the human being, we fail to engage the patient so let's start there. At some point in our lives, we will all find ourselves needing to engage - or looking to help someone else to engage - with their health. This is inevitable. Survival is hardwired into us - because we want and need to survive. In an ideal world, survival would be the primary driver for health engagement and perhaps thousands of years ago, our drive for survival alone enabled us to keep healthy to some degree. Back then, health was integral to our simple existence, based on our survival.

Modern human engagement on this pretext no longer applies. We can only imagine this would consist of a simple need to remind ourselves that death is our alternative to life, and that a shorter life or poor-quality existence is the price to be paid for living an unhealthy life, and so, for goodness sake, engage and take action accordingly! But the world has changed and continues to change; it could now be argued the unhealthy life is thrust upon us in a way that it never was years ago, and it is clear that whilst our drive for survival can take us so far, in our complex modern lives of unprecedented external input, of industry, of commerce, of societal expectation and myriad psychological pressures, many of us have lost our way.

One good example from various studies has shown the majority of our food choices are made unconsciously, no longer driven by our instinct for survival but by our complex food environment. In our busy modern lives, we have become isolated, damaged, and fragile. Our mechanisms of survival have been compromised, we rely on third parties for our nutritional fuel, and we lost part of our identity and natural function along the way.

So if survival has been lost as a primary driver to engage with our health, what do we have left?

Well, here's the better news... We see every day in our work that our compassion for others and their compassion for us is our shining light in the search for engagement. Beyond the human drive for survival, our fear of pain or our terror of death, we are driven, at the core of our humanity, by our compassion. Human engagement is not just about the individual concerned (a mistake so often made in patient-engagement campaigns). It is about our connectedness to our families, to our friends and communities, even to nature itself.

When we are sick, people often feel very isolated, and this loneliness is often mirrored on a cellular level. Cancer cells, for example, are the most isolated, damaged, and fragile cells in the human body. Their mechanisms of repair are destroyed, they cannot produce adequate fuel, they have lost their cell identity and natural function. Sound familiar?

A huge number of people, perhaps now a global majority, have become disengaged from their health - outsourcing its various component parts either willingly or unknowingly - and sadly losing control of their health, but this can change. We have the privilege to record health journeys every single day and we know, with certainty, that there is a way back to successful health engagement for the human race, and the key is in our drive to keep going for the people we care about, to bring others along with us and to help others who are sick or vulnerable.

This is no longer just about our survival. It is about finding our human purpose for survival. We see in our work that we all have a purpose in there somewhere, and until we find that purpose, making progress away from ill health will be elusive or, at best, temporary.

When we decided to intervene in our dad's health in 2013 there were several reasons why we tried. The obvious ones were physical - dad's foot collapsing due to the diabetes, his worsening eyesight, his atrial fibrillation, his ulcerated toes, his inability to feel his fingers, his doctors telling him he would have an imminent heart attack or stroke, that he faced amputation and would likely die within two years of the op. But the physical stuff was still not enough for us to step in. The conditions and threats were driving a deep depression and apathy in our dad and this was the pivotal fact.

It was dad's retraction from the family, his isolation in this wretched state, the destruction of his good humour and happiness, that broke our hearts. Dad knew all the terrifying facts about his illness but they were just not enough to "engage the patient". Over the next 12 months we showed Dad why he needed to survive, and why we would sacrifice everything to help him do just that. In that envelope of compassion we were able to halt the isolation, to challenge and cajole our father in a way that should never have been possible. We all knew why we'd engaged in his health journey, and this gave him a purpose. Working out how and where to start was just the fun part.

So, as "patient engagers", before we launch on processes, solutions and potential pathways, we should really be asking some bigger questions. What are the drivers to engagement here? Who is supporting this person? Are they isolated? Are we taking survival motivations for granted? In our experience, survival is not enough to engage a person, but purpose for survival, finding compassion and support in poor health, being connected to our friends, families and communities; these things lead to longer, healthier and happier lives and should become the defining feature of successful human health engagement.


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