Ecosystem Research: Enlarging Our Understanding of the Patient

For years, the Patient Journey has been a staple of pharmaceutical market research. Most brand teams use it as a foundational resource for understanding the clinical environment of their brand and for planning their go-to-market strategy. But does the classic Patient Journey go far enough? Does it throw a bright light on certain kinds of opportunities, but leave others hidden in shadow? How can this basic tool be made to deliver additional insight?

Let’s start by recognizing what the classic Patient Journey is especially good at. The basic genius of the tool is its underlying metaphor: the journey. A journey is a step-by-step progression with a beginning, a middle, and an end. The metaphor of the journey gives us a way to organize a patient’s experience, which is often a jumbled hodgepodge, into a disciplined, coherent framework. Patient Journeys unfold in stages. They allow us to rationally explore how patients move from one stage to the next—to examine the decision points along the way, to discover the various roadblocks, bottlenecks, and wrong turns that can occur, and to identify a more streamlined pathway to a positive outcome. 

But there is a downside. The limitation of the Patient Journey is contained within the term itself. Patient Journey. The very term medicalizes the subjects of the study right from the start. In a Patient Journey, they're not people. They’re patients. And where do you find patients? You find them in a healthcare system. A Patient Journey almost always plays out within the narrow confines of doctors’ offices, clinics, and hospitals. But maybe this focus is too narrow. 

After all, these aren’t just patients. They are, in fact, people. They have multifaceted lives, and their health concerns may affect them in many varied and surprising ways. Their actual journey is anything but a linear progression through a healthcare system, and their health conditions are with them through every twist and turn of their daily lives.  

Journeying Beyond

But what if we changed the metaphor from journey to ecosystem? In an ecosystem, everything is interconnected. Every part of an ecosystem affects the whole and is in turn affected by every other part. Perhaps the metaphor of the ecosystem can suggest a more holistic way of thinking about how a person’s health situation interacts with the entirety of his or her life. What are the hidden impacts? What are the subtle interrelationships between a medical condition and the various domains of a person’s life, not just the health domain? By taking a broader perspective, we may begin to gather new insights and new opportunities for brands to address unmet needs. To explore this hypothesis, let’s consider the ecosystem of a person with Sickle Cell Disease (SCD). 

SCD is an inherited red blood cell disease affecting millions of people of African, Indian, Hispanic, and Arabic descent. It is characterized by vaso-occlusive crises (VOCs), which are multicellular blockages in the vasculature that lead to severe pain, disability, and significant complications in most major body systems. SCD is associated with high morbidity and mortality. It is considered a rare disease in the US, with few specialists and treatment centers. SCD has a dramatic lifelong impact on the health of every person it affects. 

But the impact of SCD is not limited to health. The ripple effects are felt in various life domains. These include social life, school and work, civic life, cultural experience, and even digital behavior. All of this is part of the SCD ecosystem. To understand it, a good place to start is the classic Patient Journey, mapping the various clinical experiences of typical SCD patients. But that is only a start. To understand the totality of the SCD experience, we have to understand what goes on in those other life domains. We can do that by overlaying data from multiple sources, including qualitative patient interviews, survey results, social media listening, medical literature, and advisory boards comprising emergency department physicians, hospitalists, and patient advocacy groups. 

The Usual Suspects, and Then Some

You would expect an SCD Patient Journey to yield clusters of insight related to the main clinical stakeholders. Here are a few examples. First, patients presenting in the ED in the throes of a VOC often believe that stigma related to perceived drug-seeking behavior results in delayed or insufficient pain management. Second, a lack of objective pain scales and clear treatment protocols leads to wide variability in ED triage, opioid dosing, admission, treatment, and discharge. Third, pediatric patients are often closely followed by primary care physicians but may not make a smooth transition to adult care. In the case of SCD patients, this dropped hand-off can increase the risk for serious SDC-related complications. These are the kinds of insights you would typically discover in a classic Patient Journey exercise.

An ecosystem approach would reveal additional insights. We might learn that in the social domain, school-age children are often isolated from their classmates who are afraid of “catching” the disease. In later years, this experience can lead to difficulty disclosing or discussing SCD and issues with maintaining adult relationships. 

In the work domain, some employers express frustration that employees with SCD cannot pass drug tests, often miss work during probationary periods, and can call out 20 or more days per year. On the other hand, some employers provide accommodations for workers with SCD, but this can lead to resentment from co-workers, which is often exacerbated by racial or socioeconomic biases. 

In the cultural domain, an SCD ecosystem might touch on the Tuskegee Effect. The Tuskegee Study of Untreated Syphilis in the African-American Male was carried out by the United States Public Health Service between 1932 and 1972. The study was finally discontinued after 40 years because of grave ethical concerns. The Tuskegee Effect refers to the resulting deep, continuing  suspicion among some members of the African-American community of the entire healthcare establishment. Because of it, some SCD patients may be reluctant to participate in clinical trials or even engage with the medical profession to manage their disease. 

Sussing Out Opportunities

At the end of the day, pharmaceutical brand teams commission research to answer questions. What are the unmet needs of patients and the healthcare professionals who care for them? What are the clinical needs our brand can directly meet? And what are the very real psychosocial needs our brand can support? How can we help prescribers assist patients in ways that are meaningful and differentiated? In SCD, a classic Patient Journey exercise might identify opportunities like supporting the development of ED protocols, facilitating the pediatric-adult care hand-off, and strengthening regional patient advocacy groups. An SCD ecosystem might identify additional opportunities, such as developing educational resources for families, employers, schools, and community groups, or educating state and federal legislators on the burden of SCD, or helping patients and advocacy groups understand the purpose, importance, and safeguards of modern clinical trials. When the palette of insights is broader, so are the strategic opportunities available to a brand.

Serving Patient Centricity

A common goal among healthcare professionals, provider organizations, and pharmaceutical executives is to advance the principle of patient centricity. The ecosystem approach is designed to serve this goal and can be a primary resource for brand teams as they embark on the long process of bringing a drug to market. Ecosystems include all the elements of the classic Patient Journey. They look at patient flows, hand-offs, inflection points, and care gaps. But then they go further. They explore the wider ecosystem of a disease like SCD. They look into the social, cultural, and economic domains of people living with the disease and consider how it affects the entirety of their lives. As a result, all kinds of possibilities can emerge—and not just for clinical and commercial development teams. Ecosystem research can uncover important insights for other key stakeholders within the sponsoring drug company, including Access, Government Relations, Community Relations, Investor Relations, and Corporate Communications professionals. 

Let's always remember that people are people, not just patients. When we consider the many domains in which a person moves, and not just the medical domain, what emerges is a richer, more nuanced, and more complex view, along with a whole new range of possibilities in supporting patients’ needs.