Post-Treatment Patient Studies

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.

Surviving Survival: Patient Unmooring after the Patient Journey

Bonnie Dibling, CEO & Lead Healthcare Researcher
March 25, 2024

Over the span of my 25-year career in qualitative research, I’ve had the privilege of collaborating with healthcare and pharmaceutical innovators whose breakthrough treatments have helped countless patients struggling with serious and chronic conditions. In this work, I’ve seen first-hand the dedication, compassion, and drive of medical professionals and researchers as they strive to find cures for often devastating diseases.

I’ve also had the privilege of talking with hundreds of patients, family members, and caregivers for whom these innovative treatments are meant. Following several recent projects we completed with a biotech company developing a novel treatment for certain chronic diseases, I’ve been thinking more and more about what happens to these patients after their treatment is finished.

Clearly, finding out that the treatment worked and the patient is now disease-free are causes for celebration and relief. But for many patients as well as their loved ones, the end of a long and difficult treatment can trigger the start of an emotional struggle. And unlike the original disease, this psychological aftereffect often goes untreated.

Abandoned, Anxious, and Alone

People who have been successfully treated for cancer, autoimmune disorders, heart attacks, strokes, chronic diseases, and any number of serious conditions can experience what I’ve come to think of a “patient unmooring.” Given a clean bill of health, these patients are in essence cut loose from their doctor and care team, and told to go forth and live their lives. Besides the annual follow-up, there are no more doctor’s visits, no more therapy appointments, no more competent medical professionals guiding them. This can leave patients feeling abandoned.

The disease may be gone, but the trauma left by the patient’s medical experience is still very much present. This trauma can manifest itself in multiple ways. Fearful that the disease will return, patients may start to catastrophize. Feelings of anxiety and depression creep in, overshadowing any joy that comes with a clean scan or encouraging lab result.

Studies reported by the Lancet Oncology, for instance, found that long-term cancer survivors and their spouses experience higher incidents of anxiety than participants in healthy controls. A 2023 study published the General Hospital Psychiatry journal showed a high prevalence of anxiety and depression in survivors of cardiac arrest (up to 24%), with anxiety symptoms persisting for one year or more.

In studies of COVID-19 patients who had been treated in the ICU, feelings of anxiety and depression in these patients increased over time and remained high even 12 months after discharge. According to the findings, 42% of these patients experienced long-term anxiety and 40% suffered from lingering depression.

Patients who are unable to be overjoyed or grateful for their recovery may also have feelings of guilt and shame. It can seem like everyone around them — from providers to loved ones — expects the patient to pick up right where they left off before they got sick. This can lead to feelings of isolation, as patients are unable to share what they’re going through with others.

Medical Trauma After Treatment

Indeed, the post-treatment experience of some patients falls within the definition of post-traumatic stress disorder (PTSD) — a health condition triggered by a terrifying event. The International Society for Traumatic Stress Studies reports that 20% to 30% of people who receive intensive care experience PTSD symptoms after being discharged. Studies reported by Frontiers in Psychology also show a high incidence of PTSD for patients who have been in vulnerable medical situations, including childbirth.

Often referred to as medical trauma, medically related PTSD can result from a patient’s exposure to pain, injury, serious illness, and medical procedures. Lengthy, complex, and/or painful or intrusive treatments coupled with uncertainty around outcomes certainly fall within the medical-trauma category. Symptoms of medical trauma run the gamut and can include numbness, disassociation, panic attacks, feelings of rage or shame, substance use, eating disorders, self-harm, compulsive behaviors, sleep problems, as well as anxiety and depression. I’ve heard patients describing many of these symptoms when speaking about their post-treatment experiences.

While trying to navigate these psychological hurdles after completing their treatment, patients have no care team or doctor to turn to, and no tools or resources to guide them. Which leads to the question: Why not? And a follow-up question: How can we change this?

Meeting the Challenge with Research

Here is my challenge to the healthcare, medical, and pharmaceutical community, including the qual researchers who help them better understand patients (I count myself among those). In the noble quest to develop and launch breakthrough treatments for chronic and serious medical conditions, healthcare innovators must also consider what happens after the treatment.

What can be done to avoid patient unmooring? How can we keep patients connected to compassionate and competent medical professionals trained to help them understand and manage the physical, mental, and emotional impact of the trauma they’ve lived through?

Understandably, the focus of novel treatments has long been on the clinical ramifications for survival. Cure the disease so that the patient can live. Let’s expand the focus to include what that life is like once the treatment is finished and the disease has been vanquished. In our qual research, let’s learn more about the needs of these patients and their families post-treatment and use those insights to inform innovative strategies to support their mental wellbeing.

A few of these strategies have already been tried and tested with encouraging results. The non-profit Regenstrief Institute and the Indiana University Melvin and Bren Simon Comprehensive Cancer Center recently co-launched a pilot study for breast cancer survivors incorporating acceptance and commitment therapy (ACT). After receiving 6 weeks of group-based ACT, women participating in the study developed better skills and tools to help them cope with distress and anxiety. Six months after completing the program, the women reported a significant reduction in their fear of cancer recurrence as well as fewer symptoms of anxiety and depression.

Another pilot program launched by the Arizona State University Edson College of Nursing and Health Innovation explored the benefits of digital storytelling to help patients who had undergone hematopoietic stem cell transplantation (HSCT) as well as their caregivers. Participants completed a digital storytelling workshop, then together they watched the digital stories they had created about their personal experiences. Researchers are now assessing whether these shared stories helped the HSCT treatment survivors and their caregivers cope with psychosocial distress and isolation.

While these pilot programs are a promising start, there are significantly more untapped opportunities to explore post-treatment patient care focused on emotional and mental wellbeing. As mission-driven innovators seeking to improve lives, healthcare and pharmaceutical companies also have the opportunity to lead the charge in this type of research.

As qual researchers who specialize in healthcare, we would welcome participating in these studies. And we think patients would as well.

Why Words Matter in Qual Research: For Meaningful Insight, You Need Meaningful Language

Have you ever repeated a word so often, it starts to lose its meaning? Try it: say the word “flower” 30 times in a row. You may find that after a while, it begins to sound like a random assortment of sounds, devoid of rhyme or reason.

There’s a scientific term for this phenomenon known as semantic satiation. Coined in the 1960s by Leon James, a professor of psychology at the University of Hawaii, semantic satiation occurs when the rapid repetition of a word triggers both sensorimotor and central neural activity in the brain repeatedly. With each repetition, the word loses its intensity. To put it another way, the neurons become filled up with the word until they are completely satiated and unable to consume any more — at which point, they start rejecting the word’s meaning and it becomes gibberish.

In James’ own words, semantic satiation is described as:

“…a kind of a fatigue. It’s called reactive inhibition: When a brain cell fires, it takes more energy to fire the second time, and still more the third time, and finally the fourth time it won’t even respond unless you wait a few seconds. So that kind of reactive inhibition…is what attracted me to an idea that if you repeat a word, the meaning in the word keeps being repeated, and then it becomes refractory, or more resistant to being elicited again and again.”

Fascinating, you might be thinking. But what does that have to do with qualitative research?

Jargon, Jargon, Everywhere

In the realm of qual research, semantic satiation may not seem like much of an issue. But jargon satiation certainly is. As researchers, we’re tasked with extracting meaning from the responses and feedback — that is to say, the words — we elicit from participants during focus group and interviews and distill into reports. Which is why it’s so very important for us to make sure the words we use to steer these conversations also have meaning. That requires being precise, clear, and jargon-free in our word choices — particularly when conducting complex B2B research for the jargon-rife technology, healthcare, and finance industries.

Jargon in the business world is everywhere. Best in class. Cutting edge. Synergies. Ecosystem. We’ve all heard these terms bandied about so many times, they’ve lost any meaning they might have once communicated. In fact, according to a survey conducted by American Express, 88% of office workers admitted to pretending to understand business jargon when in reality they had no clue what the words meant. Meaningless jargon is so pervasive, Grant Thornton — a global leader of audit, assurance, tax and advisory services — put together this comprehensive index of the most commonly (and egregiously) overused business buzzwords.

So how can we as researchers make sure we craft our screeners, discussion guides, and interview questions using words that eschew jargon and convey meaning? And how can we guide conversations with respondents that reveal meaningful insight? Yes, avoiding jargon is top of the list. But beyond the buzzwords, there are other steps we can take to communicate and converse with greater clarity, precision, and meaning.

Forego the Fluff

As moderators and researchers who enjoy a good story, we may be tempted to accessorize our screeners, discussion guides, and interview prompts with extraneous words and bloated descriptors that provide more fluff than substance. In addition to clouding the conversation, fluffy words may influence or bias participants to respond a certain way they might otherwise not have. That in turn impacts the quality and usefulness of the insight.

Be Specific

This guideline goes for the questions you ask, and for the responses you receive. Avoid generalized terms like “thing,” “some,” or vague words like “good,” “bad,” “happy,” “sad.” Drill down into the specifics of what constitutes good and bad, what made them feel happy or sad. Make sure your respondents truly understand the question, and if they don’t, rephrase it. If you’re not sure what a participant means by their response, ask for specificity and steer them toward those details.

Account for Interpretation

Words that sound specific and technical may be wind up having different meanings for different people. AI, for example, covers a broad range of technologies, methodologies, and implications. Depending on the level of knowledge and experience of the respondent, AI to some might mean ChatGPT while to others it means a robot or a self-driving car. You could be talking about limited memory AI or self-aware AI or theory of the mind AI. Clarifying squishy terms will help avoid misunderstanding or misinterpretation.

Define Your Terms

When using words that may be interpreted differently, it helps to provide clarifying definitions that get everyone on the same page. So for example, if we’re asking focus group participants about their experience using software as a service — which has become a vague bucket lumping together a wide range of cloud-based software delivery models — we let the group know what we mean by that phrase.

Keep It Simple

Even — perhaps especially — with the complexities of technology, healthcare, and finance, we find that simple is often best. Get right to the point. By distilling a question down to its most basic form, using the fewest words possible, you may be able get your meaning across more clearly and directly. This approach is also more likely to get straightforward answers.

Speak Their Language

As moderators, we want to connect with our respondents. In our experience, the most meaningful insight comes from having peer-to-peer conversations with participants. That requires speaking their language, using words they use in their everyday work and lives. We remind ourselves that at the end of the day, we’re conversing with people — not just software engineers or neurosurgeons or brokers or interview subject #32. So talk to them, one human to another.

Reports, Too

All these guidelines apply to reports as well. To reveal truly meaningful insight, reports need to be simple and straightforward, with zero fluff, bias, or bloat. They need to get to the point as quickly as possible, with clearly defined terms that leave no wiggle room for multiple interpretations. And they need to be crafted for the audience who will be using them; a report written for a CEO should differ from a report written for a brand manager, for instance.

All this to say: words matter. A lot. The power of qualitative research comes from the story it reveals behind the data — and the words used to tell that story. Choosing those words carefully, with precision and intent, ensures that the stories we tell as researchers are truthful, resonant, and impactful. And above all, immune to semantic satiation.

Rethinking the Qualitative Research Paradigm: Embracing Expertise Over Generalization

In the dynamic world of market research, qualitative researchers often find themselves navigating through diverse industries, exploring topics ranging from disposable diapers to deep tech and healthcare. For decades, the industry has favored the archetype of the qualitative researcher as a generalist—a versatile individual capable of rapidly adapting to various domains. Paper towels this week, edge computing the next. I ought to know. This was my life for many years.

But—and I’m veering into hot-take territory here—this approach may not always yield the most insightful results, particularly for B2B companies with complex products and services. I posit that subject matter expertise is the quality that matters most in qualitative research. Matter of fact, I bet my career — and my company — on the conviction that expertise should be at the forefront of qualitative research. Here’s why.

The Advantages of Expertise

Why is expertise crucial in qualitative research? For myriad reasons. Entrusting your complex research to subject-matter experts specific to your industry yields several significant advantages: faster learning curve; more meaningful and revealing conversations; an understanding of rapidly evolving industries and topics; and increased trust and credibility between researcher and client. All of which leads to better, deeper, actionable insight that generates enduring results. Let’s explore further (after all, that’s what researchers do).

Faster Learning Curve

The more complicated the research, the more time it takes for a generalist to become comfortable enough to lead productive discussions about it. Researchers who bring an already-substantial foundation of industry knowledge can get up to speed faster and dive into the research more quickly and confidently. This research readiness is especially valuable for clients who need insights sooner rather than later to make business-critical decisions.

More Meaningful Conversations

Specialized researchers possess firsthand experience and knowledge within specific industries or fields, enabling them to approach research from a peer-to-peer perspective. Interviewing a group of highly specialized doctors? Bring in a researcher who once led cardiac and neurosurgery ICUs. Conducting a focus group of Linux kernel developers? Helps if your moderator is also a software engineer. This industry-insider insight fosters deeper connections with participants and facilitates the exploration of nuanced questions that might otherwise go unasked.

Deeper Understanding of Ever-Changing Fields

Nowhere is the need for specialization more apparent than in industries like technology and healthcare, where the pace of innovation is relentless. In these domains, having someone fluent in the industry is not just advantageous—it’s imperative. Technologies evolve rapidly, and healthcare landscapes undergo constant transformation. Without researchers who live and breathe these sectors and follow their changes, valuable insights risk being overlooked or misinterpreted.

Increased Trust and Credibility

Expertise lends credibility to the research process. Clients are reassured knowing that their projects are in the hands of individuals who not only understand their industry but are deeply immersed in it. This trust becomes the foundation upon which fruitful collaborations are built, ultimately leading to more actionable insights and informed decision-making.

Embracing the Expert

Given these clear advantages, why then has the qualitative research industry clung to the generalist model for so long? Perhaps it’s rooted in tradition, or maybe it’s simply a matter of convenience. My guess is that it’s because there are simply not enough subject matter experts out there who turned to qualitative research. Regardless of the reasons, it’s time for a paradigm shift—a reimagining of what qualitative research can and should be.

One last thought: it’s essential to acknowledge that specialization exists within the realm of consumer packaged goods (CPG) research as well. CPG researchers are their own breed of specialists. They possess a unique understanding of consumer behavior, brand perceptions, and market trends within the CPG space. Their expertise enables them to unravel complex consumer dynamics and deliver actionable insights tailored to this specific domain. So the specialized researcher isn’t just for high tech and healthcare; it benefits clients across industries and audiences — B2B and B2C.

By embracing specialization, we can elevate the quality of our research and deliver more impactful insights to our clients. I’d be interested to hear your thoughts and experiences on specialization vs. generalization. Reach out and let’s discuss.

Transformative Insight: Helping a Biotech Innovator Find Their Target Audience

Patients with chronic conditions often live with near-constant pain and discomfort, compounded by long-term treatments that come with unpleasant side effects. So when a biotechnology company discovered that an existing treatment could be adapted to treat and possibly even cure a select group of non-malignant chronic diseases, they knew that had the potential for a breakthrough new therapy. They also knew they needed to learn more about the medical professionals who might one day be offering this transformative treatment to their own patients.

After searching for a research firm, the company connected with Thinkpiece and knew they had found a kindred partner — one who is just as energized about the potentially life-changing treatment they were developing. Our healthcare research team offered exactly the multi-faceted experience the client was looking for: first-hand healthcare knowledge as former clinicians-turned-researchers combined with B2B expertise.

A Partnership Built on Shared Passion

We jumped at the opportunity to collaborate with this innovative biotech company led by a brilliant team of doctors and scientists. As this was the company’s first foray into qualitative market research, the client was excited to be part of the process and open to learning as much as possible about their audience. We were equally excited to join the client’s journey at the early stages of development and discovery, where our research could have the greatest impact.

In the first year of our partnership with the client, our research focused on answering two key questions: does it make sense to pursue this treatment for chronic diseases, and if so, what does it mean for the future direction of the company? For the initial studies, we found and recruited doctors with a specific specialty to glean their level of interest in offering this therapy to their patients, and how doing so might affect their practice. The response we received confirmed what the client suspected, while also revealing unexpected truths.

Finding Answers and Direction

Our first research studies clearly identified a need for a novel treatment like the one our client is developing, and excitement on the part of doctors. We also discovered that the doctors we interviewed were hesitant about the prospect of delivering this complex new treatment to their patients through their own practices. Based on these findings, we uncovered that delivery of the therapy would likely require collaboration and coordination with a highly specialized healthcare team.

These initial studies opened the door to additional research into the types of practices and specialties that would be more likely to have the competencies and willingness to deliver this highly complicated treatment. For these follow-up studies, we were tasked with finding a very specific type of respondent with unique management responsibilities within a healthcare organization. Our resourceful field manager was able to recruit the right respondents to meet the criteria and get us the answers we needed.

The client additionally credits our team with having the clinical experience to converse comfortably and confidently with high-level medical professionals, know which questions and follow-up questions to ask, and expose a more meaningful layer of insight. Building on our previous familiarity with this particular field of therapy, we were able to quickly grasp the highly technical and complicated nature of the treatment and dive into the studies quickly.

(Re)usable Reports

The studies we’ve completed with the client to date have provided the leadership team with the foundational insight to steer the company’s strategic direction and future research. By bringing Thinkpiece into the process early in the company’s development, the client has been able to avoid incorrect assumptions and make more informed decisions about where to take their treatment.

The client has additionally been able to leverage the insights from the reports we generated for external presentations, including with investor audiences, and plans to leverage the insight for key decision-making moving forward. We look forward to continuing our collaboration with this innovative, mission-driven company as they bring their breakthrough treatment to market and in the hands of medical professionals who will use it to improve millions of patients’ lives.

Explore Thinkpiece’s healthcare research experience here.