A Gemic Whitepaper In an era where the values and ethics of companies are among the first things evaluated by consumers, healthcare companies are not exempt from this, despite the necessity of their services. Finding, articulating and acting on those values of care is the future of patient centricity and it must be rooted in a cultural transformation.
We live in the age of patient centricity. Look to the mission statements of every big healthcare player – from life sciences to insurance providers – and all of them inevitably cite their commitment to delivering patient-focused or patient-centric care. Let’s be clear: this in and of itself is not a bad thing. The embrace of patient centricity has been responsible for very real improvements in the ways that the industry thinks about the people it serves, how it orients and delivers care to them, and in the experiences of patients themselves who, for so long, were the buried lead of healthcare. And yet it must also be acknowledged that the patient centricity movement has neither lived up to its potential nor is even adequate, even in theory, for the needs of the ecosystems of people who make up the primary actors in any healthcare setting. This includes patients, their families and loved ones, doctors, nurses and all manner of other healthcare practitioners. But if not patient centricity, which has for some time now provided a valuable ethical underpinning that the industry relies on, then what?
So, what comes after patient centricity and why do we need to move on from it as the central organizing principle of delivering care in the 21st century?
What is patient centricity?
The origins of patient centricity can be traced back to social movements of the 1960’s when established hierarchies and power structures were being challenged. The notion that sick people were just passive receptacles for doctor’s superior knowledge and that medicine was just a functional exercise in treatment became the target of patients’ rights movements. At the same time, systemic and social changes allowed this thinking to burgeon. But it was really with the advent of the Internet and easily available access to all kinds of information – medical information, doctor ratings, drug prices and alternative therapies – that the true disruptive nature of patient centricity began to be fully realized.
With the Internet in play, the consumerization of medicine and healthcare really came to the fore. Customers – patients in this case – had choices and healthcare companies found that while they understood the science and the medicine behind their products and offerings, they did not have a sophisticated understanding of their patients’ lives, experiences, key needs and challenges.
What then is patient centricity now? Obviously, it’s no one thing but a collection of intentions (or a collective intention?) to account for the needs and experiences of patients in the provision of care. What does this mean in practice? The narrative of patient centricity has informed everything from the plethora of patient support services offered by pharma and life science companies to new ways of orienting services and care in clinical settings. Most of all, many might argue, patient centricity has come to reside in health companies’ mission statements and marketing materials. That’s not to say that it is empty of effect, but it has re-oriented the ways in which healthcare is spoken about and the ways in which the needs of patients are said, at the very least, to be prioritized.
Why patient centricity is not enough
As a movement, a genuine exercise in empathy and as a marketing strategy, patient centricity has been inadequate to the task. We need to move on now. As an organization that has and continues to bring genuine patient experiences to bear in the allocation of healthcare resources and the design of healthcare services to make healthcare more patient-centric, it may strike some as strange for us to advocate moving on from it. But we stand by this position not as a rejection of patient centricity, but in the spirit of evolution, of striving for more and doing better. The move to patient centricity was a beginning – not an ending – of how the system needs to adjust. However, there are plenty of examples how and why the system needs to evolve:
- We keep spending more and more on healthcare but do not have dramatically better outcomes to show for it. Beyond this, patient satisfaction lags behind where it should and could be. According to some measures, Americans are amongst the most globally pessimistic about the future of their healthcare.
- The promise of digital technologies – for so long mooted as the means to pull healthcare into a more patient-centric world – has largely failed to live up to its promise. Digital in healthcare has been transformative in some ways for sure – think EHRs – but have the potential benefits of digital truly trickled down in ways that have scaled out benefits for the patient population at large?
- Patient centricity as it is currently defined seems stuck and needs a reboot. Apps, nudges, patient support programs, reimbursement support, adherence reminders, diet and exercise advice and a whole host of patient experience offices, personnel and surveys encompass the material evidence of the patient centricity movement. With all this in place, though, patients continue to feel disconnected and alienated from the system. One example is adherence. For all the effort to make adherence patient-centric and to try and equip patients with tools and advice that genuinely will help them to adjust their behavior and take their meds, little evidence is out there that these have had significant effect and resonance in people’s lives. Numbers abound on this, here are just a few cited from the American College of Preventive Medicine: non-adherence costs the US economy as much as $300 billion dollars a year; it accounts for 30-50% of treatment failures; and depending on the condition 20-50% of patients are non-adherent at any one time. These numbers are only expected to rise in the coming years as the burden of chronic disease management increases.
- Perhaps most importantly, patient centricity is inadequate as a paradigm for contemporary care because it itself emerges from and is stuck in a cultural model of care that, while it may remain dominant, is no longer ascendant. Patient centricity’s cultural DNA reflects old models of medical authority, social arrangement and cohesion, and economic realities. Largely built on a model of individual acute care reflecting older socioeconomic realities, patient centricity has done little – and may very well have exacerbated – forms of atomization and alienation from the care system that continue to plague healthcare delivery and affect outcomes negatively. The democratization and distribution of medical knowledge, the increasing challenges of managing chronic care alone, the costs of care and the increasing inequality of income distribution, the hollowing out of the middle class and even the reformation of extended families all point to a model of care that needs to evolve.
Where do we go from here?
Moving on from patient centricity should not be thought of as evidence of its failure. More to the point, the current iterations of patient centricity have just exposed gaps in how it could come to life in a more robust, systemic and authentic way. In some ways this means patient centricity is a victim of its own success – that said, there are probably a few people out there that would argue that there isn’t significant room for improvement. So where exactly do we go from here?
People, not patients
While some might argue that the word ‘patient’ implies a duty of care, the word comes with a heck of a lot of baggage. Becoming a ‘patient’ is a process of linguistic and social transformation from a whole person into an object of intervention. The word patient, then, and the services designed to support it, struggle to recognize the patient as a whole person. This means that patient centricity efforts still tend to box in the person as the site for and the object of one-sided interventions of care. Seeing the person as a patient leaves distorted power imbalances in place.
Fragmented and inflexible care
In terms of care delivery, we have a significant distance to go in terms of bringing care to people on their own terms. For too long we have relied on the fictions of personal responsibility and the notion of the proactive patient to remove ourselves from the responsibility of the provision of care to all. But if patient centricity and whatever follows it means anything, it means bringing good care to as many people as possible. In recently published research by Accenture, more than 60% of patients said they would happily switch providers if it meant getting an appointment sooner. Similarly, the same research found that just over half of respondents would change providers if they were offered care in a more convenient location. What we have learned, in effect, is making access and delivery of care as flexible and integrated as possible makes a huge difference in the outcomes that are generated. But what seems easy and straightforward is actually difficult to implement. That said, the organizations that are pioneering this (such as the Commonwealth Care Alliance in Massachusetts) and making it a core value of their healthcare delivery are seeing genuine results.
Ecosystems, not individuals
One of the biggest limitations of current conceptions and orientations toward patient centricity is its bias towards individualism. Now we know, of course, that diseases are experienced by individuals. But ample work by medical anthropologists, sociologists and many others orient the experience of illness much more broadly than simply the sick individual. From these perspectives, illnesses can most productively be understood as social entities, with the experience of being sick reverberating across many different people. This can most clearly be seen in the experience of caregivers. Patient-centric services have, in some cases, sought to include them in their outreach. Yet, for the most part, patient centricity is focused on the individual with the disease and has little to offer those (beyond that individual) who remain profoundly affected by the illness. This has the unintended effect of placing enormous burdens on the sick person as the one responsible for coordinating and marshalling the help of others and places them, ironically, too often in the opposite role intended: giving care and support to others.
Care, not products and services
Most healthcare organizations have followed a model based on a blend of market research and design thinking that assesses and determines “unmet needs” and then determines which of those needs are most acute, most impactful and most easily solved. Then, they try to “solve” for them. These solutions run the spectrum from simplistic and quite spartan in nature to relatively robust. What they have in common is that they think of needs in isolation from one another. Consequently, such organizations see the patient as a patchwork of disconnected “needs” that can be serviced. While there are notable exceptions, the industry has never been able to step away and see what the connective tissue between these needs and how they can start to connect them to people within the context of building authentic relationships of care.
A commitment to care
It is on this last point that we should reflect for a moment. We need to rally around a set of cultural values that allow us to orient health within our economies, companies and everyday lives. For too long, sickness has been seen exclusively as the purview of biomedicine and bodies as sites for medico-scientific intervention. But the rise of chronic illness alongside and in conjunction with patient centricity has successfully challenged this notion. Now sickness is largely about management, health is aspirational, and we are always at risk. As such, sickness and health are knitted intricately and intimately into people’s everyday lives, inseparable from the activities, emotions, hopes and values that animate it. As part of the everyday, illness is no longer something that can be isolated or time-boxed. It has become complexly itself, tied into all the events, emotions, networks and actions that compose life.
To meet this experience, we need to place a cultural value around health, patients and the things that we do to help people recover from sickness and stay healthy. I think we can find those values in the notion of care. Care is more than the delivery of services or functional transactions between two parties; care implies a relationship. We might even say that care implies a kind of responsibility or a social contract between two parties that goes beyond economic exchange. Care, as a guiding concept, might also allow us to see how to integrate the system in ways that help to speed more transformative health solutions. Care can be a mandate for traditional health actors as much as it can or should be for food, financial services and insurance companies (just to name three).
What would patient centricity reimagined as a commitment to care mean for you and your company? Moreover, where can companies find new sources and forms of value in this shift? In the life sciences, the first one is obvious: embracing care as a commitment to the people you serve offers up the promise of better engagement with them. Better, more authentic engagement can help to communicate and embed educational materials and adherence advice as well as offer a pathway to creating relationships that can truly support behavior change. This engagement can also offer physicians more meaningful tools to forge actual human relationships with their patients. Creating an ecosystem where true and significant engagement can take place – by which I simply mean interactions that are grounded in more than a transactional or mechanical basis, interactions that take into account identities that go beyond the singular formulations of “patient” and “doctor” and interactions that take into account our emotional selves as important aspects of social need – offers the ability to create more longitudinal, lasting relationships between all persons in the care system.
A commitment to care also means enabling your company to prepare for known and unknown disruptions to come. The democratization of knowledge, the distrust of authority (scientific or otherwise), new technologies from AI to IoT ecosystems to 3D printers, to increasingly imbalanced distributions of income are just few commonly realized signals that point to significant upheaval of current business models. There are more. Because of this, resilience and sustainability will be an important feature for companies to acquire both as attributes of their working culture and as elements of their business strategy. How does looking beyond patient centricity help build these qualities of resiliency and innovation? To begin with, having the foresight to contemplate modestly and radically different futures is a means of forcing oneself to reckon with alternative business models and new paradigms. It becomes a form of discipline that helps companies to anticipate changes in the marketplace.
Perhaps more importantly, looking beyond the orthodoxies and models that have defined patient centricity up to this point will allow companies to forge more direct relationships with what truly motivates them, allowing people to live healthier, more meaningful lives. While there is appetite for innovation in this space, it is too often incremental and bogged down in what exists today rather than what could exist tomorrow.
Embracing these changes will not be easy, as even the most basic tenets of patient centricity have been unevenly taken up across the various sectors of the health industry. Moreover, these changes do not just entail adjusting how you speak to and engage with your customer. It also means taking a sober look at how you are organized internally to meet and address these challenges. Building programs and services is one thing, but building a corporate culture of care, one whose values mirror those your company wants to project to the people it employs as much as to the people it serves is hard work. But it is worth it. In an era where the values and ethics of companies are among the first things evaluated by consumers, healthcare companies are not exempt from this, despite the necessity of their services. Finding, articulating and acting on those values of care is the future of patient centricity and it must be rooted in a cultural transformation.
What does this boil down to? At the end of the day, healthcare is still more of a machine than it is a set of relationships. We are still missing the responsibilities, intimacies and care that comes from human relationships. Anthropologists and sociologists have spent a long time trying to figure out the qualities that are essential to universal and essential for human societies to form and thrive. One of those elements – communitas – refers to the ties that bind us together, the spirit of community that dispense with social hierarchies, social rules that connect us as humans living alongside one another. It’s a simple concept, but a profound one. Communitas can be the guiding north star of healthcare reform and, indeed, another way of saying communitas is: care. No matter how complex, how efficient, how mechanized or digitized or logical we need to make the system going forward, we also need to make it more human. Bringing all of these qualities together, the systemic and the human, is difficult but by no means impossible. Care lies at the center and it can lead the way.