Ellyn Getz: Director, R&D Patient Partnerships, CSL

“These benchmarked performance metrics and the patient engagement preparedness tool have strengthened our company’s patient focus by:

• Establishing methods to further raise awareness about and value meaningful patient engagement activities;
• Identifying new ways to co-create with patient advocates and lived experience experts; and
• Obtaining insights to optimize our protocol development and operational design.

“We hope to routinely implement this internal assessment every two years to keep track of our progress in making our clinical trials more accessible, seamless, and integrated in the healthcare experience.”

Keri McDonough: Head of Patient Voice Consortium, Syneos Health

“In addition to seeing the strategic value this tool would deliver to its customers, our company used its individual PECQ report and the larger pool of aggregate data to further refine its suite of patient-focused solutions designed to ensure that the patient voice is represented at the forefront of innovation. To roll out the PECQ internally, we selected a representative mix of commercial, medical affairs, and clinical colleagues to feed into the assessment and work together to mine its output for the most salient and actionable insights. The output from the easy-to-use tool has already delivered significant value, and we plan to revisit the assessment on an annual basis and are encouraging customers to use it, too.”

Valerie Fraser: Patient and Research Advocate, SWOG Cancer Research Network, Inflammatory Breast Cancer International Consortium

Effective communication in all forms is at the heart of patient-centered research and is so important to instill trust and assure patients that the trial design has taken their needs into consideration. All too often, patients who may be desperate for a new treatment, other tools, or who are just eager to learn, participate, and benefit from a clinical trial, can encounter challenges and disappointments with the experience. Satisfaction for patients goes a long way! It may come from materials and information that are culturally sensitive and written in ‘plain language,’ or from addressing up front what might be a patient concern. Including patients that reflect the study population in the study team is important to identifying some of these challenges. It is always comforting to know that the trial developers have considered the patient’s perspective and privacy, and that their concerns are respected and listened to in a courteous and compassionate environment. These points are also particularly important in developing the language for the Informed Consent, as this is often the first important communication the patient will receive. It should be easily readable and understood by the patient.

Patients participating in clinical research do so for the benefit from the treatment, but also for the benefit of future patients and to move science forward. Their expectation is that the therapy, drug, or intervention will be more effective, safe, and have less toxic side effects. They have an interest in knowing the end results of the trial as well as all personal treatment information that might impact their care. Patients can also provide valuable feedback to the study team, such as what they considered the pros and cons of their experience in the trial. Were they hopeful through the process? Would their experience support recommending the trial to other patients? A plan for gathering patient feedback would be important for moving the organization’s future clinical research forward as well as for patients to feel valued and included in the process of the trial. Having an assessment tool to guide organizations and trial developers in this process would most definitely drive patient-centered clinical research forward and address many of the concerns and critical communication gaps for patients.”