The cornerstone of patient engagement is centered around creating strong patient-provider relationships. And like any healthy relationship, communication between patients and providers is vital—specifically empathetic communication that promotes health literacy while speaking to patients’ unique values.
Health literacy is a patient’s ability to understand health-related information, but this definition is lacking. Clinical research should consider a more holistic, patient-centered definition of health literacy. A patient-centered approach to communication, as defined by the National Institutes of Health, is to acknowledge the whole person, their personality, life history, and social structures to develop a shared understanding of the problem, the goals of treatment, and the barriers to said treatment and wellness.
Patient-centered communication is understanding that each patient has their own motivations and barriers when considering clinical trial participation. Some barriers are related to cultural issues, others to poor health literacy or the trial itself. Ultimately, patients want to feel heard, understand their condition and treatment options, and pick a treatment option that is sustainable with their lifestyle.
During the creation of ICFs and clinical study materials, as well as discussions with researchers, speaking to these motivations will better allow patients to make informed decisions and participate in their care. We’ve identified five patient motivations, or “love languages,” that researchers should keep in mind.
The Five Love Languages of Clinical Research
Words of Affirmation: Reassurance and Information
Many patients express confusion when navigating the healthcare system, don’t understand their condition or treatment options, or are nervous about enrolling in clinical trials. The study toolkit materials should clearly explain the condition, the available standard of care treatment options, trial requirements, and risks. Additionally, patients should know that participation is completely voluntary and they may withdraw at any time. Researchers should approach the discussion by first acknowledging past trauma or fear and spending enough time to answer questions and ensure the patient understands what is being asked of them.
Quality Time: New Therapeutic Options
Many participants join trials for what they perceive as better treatment options. Whether they haven’t had success with standard treatments or don’t have many options, these patients may feel the innovative investigational treatments—offered at no cost—are a beacon of hope. Because they already feel like this treatment is their best option, they may not want to take the time to talk through the trial in its entirety. From the study toolkit to the discussion, they must thoroughly understand the trial requirements, including the fact that they may receive a placebo and the associated risks to ensure they stay engaged throughout the entire study.
Receiving Gifts: Trial Compensation
Trial participation often has a lot of burdensome requirements for patients—multiple visits, invasive tests, and lengthy time commitments. Offering reimbursement for costs associated with attending study visits, like travel, can lessen the burden on patients. Additionally, many patients are motivated by compensation for their time spent in the study. As long as patients understand the participation requirements and risks, highlighting how the trial design makes participation easier upfront can increase recruitment.
Acts of Service: Altruism
Some patients want to make a difference in the medical community and for future patients by helping to develop better treatments. Making these patients feel appreciated, and part of a group will help keep them engaged throughout the length of the trial—including items in the study toolkit that increase retention and engagement, such as regular newsletters and communications, thank you cards, and retention items are great ways of keeping patients engaged.
Physical Touch: Increased Touchpoints and Access
With ever-increasing costs and decreasing accessibility, many patients face physician shortages, extremely long wait times, or affordability issues. Clinical trials offer specialized medical treatments at no cost and increase visits and assessments to monitor their conditions. For these patients, highlighting immediate and regular access to the study team as a trial benefit will help them feel supported.
Putting the Love Languages of Clinical Research Into Practice
Patient motivation in a clinical trial, and the healthcare system at large, is a dynamic concept because there often isn’t just one reason or one barrier as to why patients may or may not participate in a trial. Incorporating patient-centric communication principles into health literacy policies, such as using the love languages of clinical research to help researchers consider different patient perspectives, can help them speak directly to patients’ needs. The result is more dynamic, impactful conversations about a patient’s healthcare options and values, leading to more engaged patients, accelerated recruitment, and increased retention.
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