Do Patient Surveys Tell the Full Story? The Gap Between Data and Reality

This Myeloma Awareness Month, we are honored to present Kenneth Casler's "Patient Voice" series. Throughout March, Ken will share his unique perspective on his journey with multiple myeloma, his insights on myeloma research, and the crucial role of patient voices in advancing care. 

When living with multiple myeloma, every patient experiences a unique journey. The fatigue, the pain, the emotional toll—it’s different for everyone. (You can read more about Ken's experience in the first article of this series, A Myeloma Diagnosis: The Emotional and Physical Reality)

Yet doctors and researchers often measure these experiences in a way that seems detached from reality. They rely heavily on Patient-Reported Outcome (PRO) surveys, a tool designed to capture how patients feel during treatment. But do these surveys truly reflect the lived experience of myeloma?

The Role of PROs in Myeloma Research

PRO surveys track symptoms, side effects, and overall well-being. They are used in clinical trials to help assess the safety and effectiveness of new treatments. The FDA and other regulatory agencies require this data before approving drugs, making these surveys an important part of the research process.

Patients are typically asked to rate their symptoms on a scale:

• I have a lack of energy → Not at all / A little / Somewhat / Quite a bit / Very much

• I feel ill → Not at all / A little / Somewhat / Quite a bit / Very much

• I am bothered by the side effects of treatment → Not at all / A little / Somewhat / Quite a bit / Very much

But does circling a response on a scale truly capture what it’s like to experience relentless fatigue, crippling nausea, or the uncertainty of an incurable disease? For many of us, the answer is no.

The Disconnect Between Surveys and Reality

Let’s take the example of CAR T-cell therapy, a newer treatment for myeloma. After receiving this therapy, I noted over 20 different side effects—ranging from severe diarrhea to extreme fatigue. 

I completed a PRO survey during this time, ticking boxes for “nausea,” “weight loss,” and “low energy.” But the checkboxes didn’t capture the full extent of what I was experiencing:

• Diarrhea? The survey didn’t ask how many times a day. By the time I returned home, I was having diarrhea 10-12 times daily, making everyday life unbearable.

• Weight loss? The survey asked if I lost weight but not how much. I lost 15 kg (33 lbs) in three weeks.

• Fatigue? I marked “Very much,” but what did that mean? To me, it meant being too exhausted to walk, work, or function normally.

This example highlights the problem: PROs might flatten the lived experience into numbers that often fail to tell the full story.

Science vs. Lived Experience: The Objectivity Debate

Researchers value “absolute data”—concrete, quantifiable information. Patients, however, describe their experiences in deeply personal, qualitative ways. This creates a divide:

• Science demands structured, objective data to make treatment decisions.

• Patients emphasize first-person lived experience, which is seen as subjective and unreliable.

The problem is that real-world patient experiences often don’t fit neatly into data models. When patients share their treatment experiences in their own words, they might be thanked for their “opinion” rather than their “evidence.” This dismissal reinforces the idea that patient voices matter less than clinical data.

Are There Better Ways to Capture Patient Experience?

While PROs have a place in research, they shouldn’t be the only tool for measuring quality of life. Other methods can provide a richer, more accurate picture of what it’s like to live with myeloma:

• Open-ended interviews allow patients to describe their experiences in their own words.

• Journaling and personal diaries help track symptoms in real-time rather than relying on memory.

• Focus groups allow patients to discuss their challenges and insights with others who truly understand.

• Storytelling provides a deeper emotional and social context for what patients go through.

We’ll do a deep dive into each of these suggestions in our next article in the series. 

These approaches move beyond checkboxes and numbers, making space for the human experience of illness. If we want to improve myeloma care, we must listen to patients beyond the survey form.

In the next article, the final piece of the Patient Voice series, we’ll explore how shifting toward patient-driven data collection can lead to better treatments and a more compassionate approach to myeloma care: “Redefining Patient Evidence: Giving Myeloma Patients a True Voice.” Stay tuned for its publication next week! 

In the meantime, you can explore other Patient and Caregiver Stories of those who have shared their experience with myeloma here:

Read More Myeloma Stories

Amplifying Patients Voice

At HealthTree Foundation, we're committed to embedding patient voices in myeloma research beyond traditional PRO surveys. While we conduct surveys, we also create platforms for patients to share complete stories, connect with peers, and participate directly in research. Through our HealthTree Cure Hub® Registry, community forums, and patient focus groups, we work to bridge the gap between clinical data and lived experience. By amplifying authentic patient perspectives, we help researchers develop studies that address what truly matters to those living with myeloma—because meaningful progress happens when science and patient experience work together.

We want to thank Pfizer (Elrexfio) for their generous support during Myeloma Awareness Month. To learn more about myeloma and explore additional resources and activities this March, visit 'Myeloma Awareness Month – From Community to Cures'.