Patients As Partners in Research: Your Contribution Matters

People with cancer decide to participate in clinical research for many different reasons. They may want access to treatments that are not yet FDA approved. They may not have other treatment options. Other patients may want to contribute to research to help others.

But only around 5% to 8% of blood cancer patients participate in clinical trials. Patient involvement in research is vitally important. It not only helps researchers develop new treatments, but it helps them understand the daily challenges of living with cancers like multiple myeloma. 

Patients are partners in research. Treatment for myeloma can be long-term and complex. By being part of the research process, patients can highlight things that may otherwise be overlooked.

Why real-world results and patient-reported outcomes matter

Research that does not consider real-world factors can miss things that are important to patients. A treatment may be effective but hard to manage daily because of side effects, time commitments, or cost. 

Research focuses on clinical outcomes. This is how effective a treatment is at controlling the cancer. 

But there are many other factors that can impact their overall quality of life. When research focuses on quality of life, it often does this through patient-reported outcomes. These are reports from patients about their health and well-being throughout a clinical trial.

When people with cancer make decisions about their treatment, they may look at many different factors. This can include choosing between a treatment that is more effective or with less side effects. Patients may also weigh factors like time in treatment, impact on work, or the ability to maintain independence. These decisions are very personal. They can vary from patient to patient. 

When researchers understand these factors, they can capture both: 

• How effective a treatment is 
• The impact of treatment on day-to-day life 

Barriers to clinical studies

Patients may face barriers to being in clinical research. This can result in clinical studies that are not inclusive. Some of these barriers may include travel, time constraints, and financial burden. When studies are designed without the patients in mind, it is more difficult to participate. This leaves people out of the research process.

In the past, many communities have not been represented well in clinical trials. This created gaps in knowledge that prevent researchers from seeing all the ways new treatments could affect different people.  

Patient involvement should be built into research from the start. When research is designed with patients in mind, it becomes more accessible. 

What does patient involvement look like? 

To ensure that patient-reported outcomes are captured, patients should be involved with shaping research questions and reviewing study design.

Shaping research questions 

Patients can help identify real-life examples of challenges they face. This helps to ensure that studies produce meaningful outcomes. 

Reviewing study design

Patients can provide feedback on how a study is set up so that researchers can better understand how to make being involved in research more accessible. Many clinical trials include patient feedback as an important part of the research process.  

Patient involvement in clinical research ensures that studies are inclusive and relevant. When research is patient-centered, it is more likely to result in outcomes that truly improve lives.

You can contribute to real-world research that helps improve outcomes for people with blood cancer by creating a HealthTree account, where you can complete simple surveys that guide future support and care strategies.
 

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