Redefining Patient Evidence: Giving Myeloma Patients a True Voice

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. 

For too long, the way we measure a myeloma patient’s experience has been dictated by numbers—structured surveys, checkboxes, and standardized scales. While Patient-Reported Outcomes (PROs) offer a method for tracking symptoms and treatment effects, they often fail to capture the depth, nuance, and emotional reality of living with myeloma. (For more on this, read Part 2 of the series, Do Patient Surveys Tell the Full Story? The Gap Between Data and Reality)

If we want to improve care, research, and decision-making, we must shift toward patient-driven evidence collection—a model that puts lived experience at the center.

The Problem with “One-Size-Fits-All” Data Collection

Every myeloma patient’s journey is different. Their disease varies biologically, their response to treatment is unique, and their emotional and physical struggles are deeply personal. Yet, current methods of patient data collection assume a universal experience. PRO surveys present rigid statements such as:

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

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

But what if a patient’s nausea isn’t just an occasional inconvenience, but something so extreme that they can’t eat? What if fatigue isn’t just feeling “tired” but being physically unable to get out of bed? Standardized questions strip away the intensity and complexity of these experiences.

Beyond Checkboxes: The Power of the Patient Voice

We know that quantitative data is essential for research, but it should not come at the expense of patient narratives. The most valuable insights into myeloma treatment—its successes, failures, and impact—come directly from those experiencing it. We need to rethink how we collect and use patient-reported evidence. This alone will help us achieve less-toxic treatments and a more compassionate approach to myeloma care.

Here are alternative methods that allow myeloma patients to tell their stories in their own words:

1. Open-Ended Interviews

Instead of multiple-choice responses, structured or semi-structured interviews give patients the space to describe their experience in detail. These conversations uncover the full spectrum of side effects, emotions, and quality-of-life concerns that a survey can’t capture.

2. Journaling and Personal Diaries

Encouraging patients to track their symptoms, emotions, and treatment responses over time provides a more accurate, real-time view of their lived experience. This data can reveal patterns that might be missed in a one-time questionnaire.

3. Focus Groups and Peer Discussions

Hearing from other patients with similar experiences can help uncover shared struggles, unmet needs, and gaps in care that wouldn’t surface in traditional research models. Patients can validate each other’s experiences and bring attention to key quality-of-life issues.

4. Storytelling as Data Collection

A patient’s narrative provides a rich emotional and social context that no checkbox ever could. How did they feel when they received their diagnosis? How did treatment impact their daily life? What fears or hopes guided their decisions? Storytelling captures the complexity of the myeloma experience in a way that traditional surveys cannot.

Making Space for the Patient’s Voice in Myeloma Research

Shifting toward patient-centered evidence collection isn’t just about improving research—it’s about making sure myeloma care is truly reflective of the patient experience. Regulatory bodies like the FDA and EMA are beginning to require more patient input in drug development, but there is still a long way to go.

For this change to happen, patients, caregivers, researchers, and advocacy groups must work together to:

• Push for more qualitative data collection alongside traditional PROs

• Advocate for patient-led research initiatives that highlight real-world experiences

• Defend the idea that lived experiences serve as valuable evidence instead of merely an "opinion."

• Encourage healthcare providers to listen more closely to patient narratives, not just data points

This advocacy will allow a continued shift toward more tolerable treatments and an intentional, sensitive approach to myeloma care.

The Future of Myeloma Care: Listening, Learning, and Evolving

If we truly want to improve myeloma treatment and quality of life, we must listen to the people living with the disease. Standardized surveys alone will never capture the full reality of the patient experience. The most valuable insights don’t come from checkboxes—they come from the voices of real patients, sharing their journeys, fears, and triumphs in their own words.

It’s time to redefine what counts as patient evidence. If we truly want to understand the impact of myeloma, there is just one simple thing to do: ask and listen.

Have you enjoyed this series? Let us know by emailing support@healthtree.org. Your input can help us create more meaningful content that matters to you. 

For part 1 of the series, visit: A Myeloma Diagnosis: The Emotional and Physical Reality

For more myeloma stories, visit:

Myeloma Patient and Caregiver Experiences

Enhancing Patient Voice in Myeloma Research

At HealthTree Foundation, we embed patient voices in myeloma research beyond traditional PRO surveys. We create platforms for patients to share stories, connect with peers, and participate in research. Through our HealthTree Cure Hub® Registry, community forums, and focus groups, we bridge the gap between clinical data and lived experience. By amplifying patient perspectives, we help researchers develop studies that address what matters to those living with myeloma—meaningful progress occurs when science and patient experience unite.

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'.