Post-Treatment Patient Studies

Understanding the Patient Journey after the Patient Journey

Bonnie Dibling
CEO & Lead Healthcare Researcher
May 7, 2024

In our previous post, “Surviving Survival: Unmooring After the Patient Journey,” we explored the myriad challenges patients and their families face after finishing treatment for a medical condition. We also encouraged healthcare and pharmaceutical companies — along with the market researchers who work with them — to include these post-treatment patients in qualitative research studies.

In this follow-up post, I’d like to focus on what healthcare and pharmaceutical companies stand to gain by continuing to check in with patients once their treatment is complete. There is a business case to be made for thinking about the patient journey as a longitudinal study as opposed to a one-and-done event.

Data shows us that patients face a wide range of emotional and mental hurdles following treatment. (For more on that, read our previous “Surviving Survival” post.) From low-grade hypertension to stage-four cancer, living through any medical condition and accompanying treatment can be a traumatizing experience. That trauma may manifest itself in a number of ways — as panic attacks, severe depression, substance use disorder, eating disorders, self-harm, insomnia, catastrophizing, and feelings of isolation, anger, and anxiety, and more.

And yet, there’s very little available research into the long-term impact of medical trauma on patients and their loved ones. Which also means there’s a wealth of insight healthcare innovators and researchers are missing out on. While there are plenty of studies centered around the patient journey — from initial diagnosis to final treatment, those studies typically end when the treatment does. It’s time to rethink this approach.

Redefining the Patient Journey

Traditionally, the patient journey is a study of the transactional journey — defined by medical appointments, procedures, and treatments, layered with what those patients/caregivers were feeling in that moment. To that end, the patient journey is not just transactional but also emotional. When treatment concludes, so do our questions about their emotional journey.

But the patient’s emotional journey extends well beyond the last follow-up appointment. What can patients tell and teach us about the trauma, challenges, needs, goals, hope, fears, and mindset that come from living through both disease and treatment? There’s one way to find out: ask them.

Instead of ending patient journey studies when treatment is complete, let’s continue past that critical milestone to the others that lay beyond. Let’s talk to patients, their families, and caregivers one year, three years, five years after the transactional patient journey has ended, and find out what they’ve been experiencing since their last treatment. The knowledge we can gain by doing so would be transformative — not only for patients but for the companies developing the treatments to cure their conditions. Here’s how.

Improve Patient Understanding
Post-treatment studies provide us with an invaluable opportunity to learn more about the patients we’re hoping to reach and the loved ones who care for them. It allows us to check in on them to see how they’re doing one or more years past treatment, to understand what challenges they’ve encountered and how they’ve faced them, and to reassess our role in their long-term recovery. After all, isn’t that what a patient journey is all about?

This will enable healthcare and pharmaceutical companies to truly develop messages and communications (perhaps even programs) which demonstrate a complete understanding of what patients and caregivers are experiencing – perhaps even before they experience it.

Reveal Unmet Needs
Post-treatment patient journey research also enables healthcare and pharmaceutical companies to identify unmet patient and/or caregiver needs and how we might address them. Do patients who use your treatments need more emotional support, mental health resources, community connection, education, activities? Do they need more interaction with their care team or other specialists? Could they benefit from interacting with other patients or caregivers who have gone through similar experiences? Knowing patients’ post-treatment needs better positions us to meet them.

Capture Differentiating Insight
This insight can also drive strategies for differentiation among patients and providers. By extending studies after treatment, healthcare and pharmaceutical companies can glean opportunities for creating and launching unique programs, services, and resources that better support patients and their families post-treatment. This in turn demonstrates a differentiating commitment to patients’ emotional and mental wellbeing.

Promote Physician Buy-In
Physicians want to ensure the long-term wellbeing of their patients. They are the ones who continue caring for their patients as they manage the aftermath of survival. By offering post-treatment support informed by the insight you’ve gained, you’re also demonstrating to doctors that you’ll continue to be there for patients and their families. This may give physicians added confidence and motivation to recommend your treatment to their patients.

Shape Your Message
Additional insight gained in post-treatment studies can also prove valuable in shaping or reshaping the way you communicate with patients at the start of their journey. The care and commitment you provide patients before, during, and long after treatment could provide the foundation for a powerful message that resonates with patients and provides alike.

Improve Patient Outcomes
Ultimately, healthcare and pharmaceutical innovators want patients to live healthier, happier, better lives. While curing the condition is central to this mission, so is supporting the wellbeing of patients and their loved ones after the treatment has concluded. Conducting post-treatment research allows us to better understand how healthcare and pharmaceutical companies can go about doing just that, while showing a level of care that goes beyond the cure rate.

Embracing a New Way of Thinking

Given the clear benefits of post-treatment patient studies, the question becomes: how do we shift the way we think about the patient journey? Here are two strategies to start this process.

1. Include Survivors. When conducting the baseline patient journey, be sure your sample reflects long-term survivors. For example, in a cancer patient journey, include 10% who have survived for more than one year if possible. This will allow you to glean insight about the post-treatment emotional journey.

2. Think Long Term. Approach the patient journey work as a longitudinal project, in which the respondents (and their caregivers) become a kind of advisory board. Schedule 30 to 60-minute follow-up calls with them annually to assess the emotional journey milestones they’ve experienced. With the rapport you’ll develop over time, patients will look forward to sharing. When participant attrition brings the numbers down, you’ll know it’s time to stop the study.

And, let’s not forget that patient journeys change right along with the fast pace of medicine. What was a journey in, say, multiple sclerosis five years ago isn’t the same journey as today. As such, every patient journey should be refreshed every five to 10 years, depending on the innovation happening in that space. Think of the research as ever-evolving — requiring a longitudinal, agile approach to yield best results.

As healthcare and pharmaceutical innovators and qual researchers, we have so much to learn from patients and caregivers to helps us improve treatments and peoples’ lives. Let’s not cut that learning short. We’d welcome the chance to discuss your thoughts on post-treatment research and extending the patient journey. Reach out anytime.