Longboat were delighted to attend the Avoca Quality Consortium (AQC) Summits in both New Jersey and Basel. Leaders from across the clinical trial industry came together to collaborate on solutions that make a tangible difference to the quality, innovation, and efficiency of their studies. The events were defined by fervent conversation around many themes, including reducing study complexity, inspection readiness versus right first time, and empowering people on the coalface to find solutions to lingering quality issues. Among the liveliest topics were patient engagement and patient centricity, which were cited as integral to solving most issues affecting the industry.
“Science is taking us more and more away from the patient. How do you make it easier for the patient?”
Feedback showed that patients want doctors and nurses to show greater empathy and understanding of “what it is like to be a patient with our condition”. They want to feel engaged before, during, and after a clinical trial. This requires acknowledgement that “the placebo-controlled trial is not a patient-centric one” and the primary outcome for the patient can be very different to the primary outcome for the study.
Drug development stakeholders recognize the disconnect between patient expectations and industry operations, yet struggle to find the “optimal” way to engage patients in this journey.
“In a year, a patient with four doctor visits spends an hour with a physician and the remaining 8,759 hours managing their condition. How do you empower them to manage?”
The nature of the conversation shows that the industry is waking up to this and is committed to improving the patient experience.
While there is an open opportunity to collaborate and create an ‘engagement model’ for moving forward, many challenges were cited:
- “Pharma companies see patients as subjects instead of patients as collaborators”
- “We have a cultural challenge in relating to patients in a way that is meaningful to them”
Proponents of patient centricity feel that the time to engage patients is here and now. The mantra, “What have you learned from patients today?” needs to be part of every drug development executive’s vocabulary.
The first step is acknowledging that patients are part of the team and then committing to the use of processes and systems that align the interests of the sponsor, site staff, and of course, patients. The second step is to integrate these systems into the lives of clinical trial participants in a way that provides the information they want, when they want it, such that it complements their lifestyles.
“Patient engagement is not hard or expensive; we just need to begin.”