Emma’s Enrollment Etiquette: an Insider’s Approach for Successful Recruitment - Patient-centricity
In this blog series, written by Emma Joyce, Senior Enrollment Specialist at ClinEdge, we explore the operations of an Enrollment Team, including the benefits of utilizing an Enrollment Specialist and the impact their services have on patients, sponsors, and sites.
During the drug development process, researchers, sponsors, and healthcare providers all have valuable feedback to share from a variety of different perspectives. Their individualized and role-specific insight influence industry decisions that directly affect patients. The discovery of a new medicine, re-evaluation of the current standard of care, or development of an alternative treatment plan to enhance the quality of life for an individual are all of equal importance in the clinical research community.
Historically, clinical trials have primarily focused on regulatory compliance, timely data submission, measurable clinical outcomes, and identification of adverse events. In clinical research, as in any scientific investigation, data is only valid if obtained through subjective and reproducible methods. These fundamental pillars, while essential for conducting viable research, have also inadvertently contributed to the stigma surrounding study participation. Lack of education and a societal misrepresentation of the industry has fostered a culture in which clinical research is conducted “on” or “about” and not “for” or “with” patients.
As an Enrollment Specialist, it is clear to us that each and every interaction with a patient is unique and certainly not subjective. Through the advancements already achieved in clinical research and the innovative changes aimed at making health information more accessible, today’s patients are more informed, empowered, and vocal. As clinical trials continue to become more specialized, a patient-centric approach to recruitment, enrollment, and retention will be necessary for sustainable results.
Patient-centricity involves designing a service or solution around the patient and is the ultimate guiding principle for Enrollment Specialists. Throughout the clinical research industry, there are multiple variations of this methodology; it is evident that this way of thinking has become more prevalent within the industry. In the UK, as developed and implemented by the National Health Service (NHS), patient-centric ideology is coined, “no decision about me, without me.” Major players in the clinical research industry also emulate a patient-centric mindset, with mission statements like, “Inspired by patients. Driven by Science.” and “Science and patients…the heart of everything we do.” Adopting a patient-centric mentality is one tactic, but adherence and commitment to the ideal are another. Through direct collaboration, Enrollment Specialists encourage patients and their caregivers to view themselves as a valuable team member and an intrinsic part of the decision-making process when considering to participate in a clinical trial.
Establishing rapport with a patient (or their caregiver, in certain instances) consists of more than just providing the applicable study information needed to facilitate a discussion about their health. Enrollment Specialists are required to know and understand the specifics of study protocols in order to determine patient eligibility. Initiating a conversation with a timid or skeptical patient requires compassion, patience, and the ability to defuse or de-escalate difficult situations. Determining a patient’s health literacy prior to delivering study information is crucial. Simply making note of a patient’s preferred method of contact and availability is not sufficient when considering how best to connect with them. Age, gender, geographic location, socioeconomic status, language, culture, the indication under evaluation, associated symptoms, the current standard of care, and approved medications and their potential side effects are among the many components an Enrollment Specialist must evaluate prior to developing a patient outreach strategy.
Recruitment, engagement, and retention strategies utilized by Enrollment Specialists place the concerns of a potential trial participant first. The pre-existing unmet needs, expressed by patients and their caregivers, provide insight into what a meaningful outcome would be for these individuals and their families. Enrollment Specialists, through active ongoing engagement efforts, serve as an advocate to voice patient concerns that may not otherwise be heard. Understanding the patient journey and realistically examining what trial participation would require of a patient, is useful in identifying the prospective barriers that can prevent a study from meeting its enrollment goal.
Enrollment Specialists are given the unique opportunity to co-create probable solutions with patients and, in turn, apply this information to execute a more efficient recruitment campaign. This solution-driven approach, aimed at generating meaningful patient outcomes yields real world results and proves the value of Enrollment Team services.
Are you interested in learning more? Watch Emma's webinar with colleague, Gabrielle Lewis, on effective strategies for successful enrollment:
Post by Emma Joyce -
Emma Joyce is a Senior Enrollment Specialist at ClinEdge. Emma has worked both directly and indirectly as a patient advocate, and brings her passion for finding patient’s solutions to the research community.