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In late December, I interviewed the spouse of a man newly diagnosed with a metastatic solid tumor. Like many care partners, she recalled the early days as disorienting: appointments, tests, and new terminology piling up with little time to catch her breath. What she hadn’t anticipated was how quickly the focus would shift from medical treatment to insurance.
Was the recommended site of care in-network? Why did one treatment location require "prior authorization" while another did not? What did it actually mean when a service was “approved,” and why did the bill still not match the explanation of benefits (EOB)? Each answer seemed to generate two new questions.
Among others, one element that ultimately helped her regain a sense of footing was a manufacturer patient support program that didn’t just point her to resources, but helped her understand how coverage worked at that moment in her journey -- and what was likely coming next.
That experience highlights an important opportunity for our industry.
Over the years, pharma, biotech, and medtech companies have become increasingly sophisticated in how they evaluate and map patient journeys. Symptom onset, diagnosis, treatment initiation, lines of therapy, monitoring, switching, and adherence are now well-established frameworks supported by robust primary and secondary research.
Typically, insurance and access considerations are already embedded within these journeys. Market access teams, patient services professionals, and reimbursement specialists work every day to address these complexities.
And yet, as patient support programs continue to expand in scope and importance, there is an opportunity to go one step further: to more deliberately research and map the insurance experience as a journey in its own right, and to use that insight as a core input into program design and optimization.
Anyone who has spent time in qualitative interviews with patients and caregivers has seen a familiar pattern. And it's always sad to see. Alongside the shock of diagnosis, there is often brimming anxiety about coverage, affordability, and administrative complexity.
This is not a reflection of negligence or disinterest on the part of patients; and it is certainly not a failure of industry effort. Insurance is complex by design, and most people only need to engage deeply with it when serious illness enters their lives.
What becomes clear through research is that patients and caregivers vary widely in their ability to comprehend the vast insurance language lexicon, anticipate challenges, and advocate for themselves within the system. Some need minimal guidance. Others need extensive, repeated hand-holding.
Understanding where, when, and for whom that support is most valuable is fundamentally a marketing research challenge.
As patient support programs become more central to the overall treatment experience, companies can benefit from developing a high-fidelity insurance journey map that complements the disease journey.
This is not about separating insurance from the patient journey, but about giving it sufficient focus and resolution.
An insurance journey map can illuminate and unpack the major touchpoints patients and caregivers encounter, such as:
Importantly, research can reveal which of these moments are merely administrative, and which are emotionally charged and anxiety-producing.
Consider patients with solid tumors who may receive care across multiple settings.
Those treated at large academic or NCCN-designated centers often have access to embedded financial counselors and reimbursement teams. Patients treated in community-based practices may have fewer built-in resources and rely more heavily on external support.
From a patient services perspective, this variation has real implications. The same support offering can feel redundant in one setting and indispensable in another.
Primary research that explicitly explores these differences helps companies understand where patient support programs can be most impactful, and where lighter-touch interventions may be sufficient.
Insurance considerations often influence patient decisions well before treatment begins.
Provider selection, site-of-care choice, and even willingness to pursue certain diagnostic or therapeutic options are frequently shaped by network status, anticipated cost sharing, and prior experiences with coverage.
Incorporating this upstream phase into insurance journey research allows companies to see how access and affordability shape real-world pathways; and how educational support might reduce friction or confusion early on.
One of the most actionable outcomes of insurance journey research is improved patient segmentation.
Rather than assuming uniform needs, companies can segment patients and caregivers based on health and insurance literacy, confidence navigating benefits, and prior experience with the healthcare system.
Some patients need simple explanations and occasional reassurance. Others benefit from proactive outreach, step-by-step guidance, and hands-on navigation. Designing patient support programs with these differences in mind improves both effectiveness and experience.
This is not about labeling patients; it is about meeting them where they are.
Research consistently shows that certain junctures within the insurance journey are disproportionately stressful.
Waiting for authorization. Receiving a denial letter. Opening an unexpected bill. Facing a sudden change in coverage. These moments are etched into memory long after clinical details fade.
When patient support programs are informed by primary marketing research that pinpoints these moments, interventions can be timed and tailored to provide clarity and reassurance when they matter most. And this helps to strengthen the patient's and care partner's trust not only in the product, but the manufacturer itself.
Education, emotional support, and financial guidance delivered at the right moment can meaningfully change how patients view and experience both their care and the company supporting it.
There is also reason for optimism. Patients and caregivers are increasingly digitally fluent and often turn to online resources and patient communities for guidance.
Research-informed digital libraries -- plain-language explanations aligned to specific stages of the insurance journey -- can reduce confusion without overwhelming patients. Patient communities further amplify and socialize this knowledge, offering peer-based insights that resonate deeply.
Understanding how patients utilize these resources, and where gaps remain, is another area where thoughtful research can guide smarter investment.
The industry has already invested deeply in understanding access, reimbursement, and patient support. The opportunity now is to bring the same rigor and depth we apply to disease and buying process journeys to the insurance-related experiences that shape patients’ day-to-day realities.
By regularly incorporating insurance-focused primary and secondary research into journey mapping efforts, companies can better identify unmet needs, prioritize interventions, and design patient support programs that are not only helpful -- but truly resonant. This is where there is a major opportunity to drive corporate trust, reputation and equity among patients and care partners.
We have all heard interviews where patients and caregivers describe navigating both the shock of diagnosis and the anxiety of coverage at the same time. Listening more closely to those experiences, and systematically learning from them, is not an indictment of current efforts. It is the natural next step.
And it is one worth taking.
