In the third installment of our annual series of C3 Summits which took place in London on September 13, we invited industry experts and leaders to discuss challenges, opportunities, and strategies in clinical trial diversity, centricity, and outcome assessments through the lens of real-world experience. In this recap, we'll review key takeaways from our patient engagement-focused panel, titled Patient Recruitment and Inclusivity - The Patient Perspective

Panelists:  

• Carole Scrafton (Patient Advocate and Director/Co-founder, Flutters and Strutters Patient Advocacy Organisation) 

Moderator:  

Leanne Woehlke (Director of Life Sciences Solutions, TransPerfect Life Sciences) 

Addressing Challenges in Healthcare Systems

This session candidly begins with Carole defining the existing healthcare system as "broken" based on her direct experience. While developments are underway to mend some of the inefficiencies, she emphasized that these efforts are futile without first addressing the fundamental issues that render the system ill-suited to patients with complex needs.  

For example, patients are often only afforded a 15-minute window in which they can discuss a litany of concerns with their physician. This is often not sufficient for those with multiple disorders, and for whom a single flare-up cannot be explained without factoring in how each condition may have an impact. To this end, a primary concern for patients is failure to collect data holistically due to a lack of communication between different specialists and healthcare staff, and failure to record potentially relevant, but less prominent endpoints in electronic health records (EHRs). In the case of the United Kingdom, specialists often may not report their findings to a patient’s general practitioner (GP) due to fragmented communication systems. Therefore, the burden falls on the patient to pass this information to their GP, inviting the risk of misunderstanding or inaccuracies. With this perpetuated lack of comprehensive data collection, the issues patients face continue to go unaddressed. 

Patients as Partners

In the case of patient centricity, the argument is made that patients do not necessarily want to be treated as ‘centric’ to research, which can feel more as though they are subjects to be assessed and dissected. Rather, the concept of patients as partners is introduced. Following that is the idea of the ‘patient journey’ - a misleading description of sorts in that there is no exact start or end by which a condition can be measured. Instead, patient mapping is suggested in its place, accounting for the multiple experiences and diagnostic Odysseys associated with complex medical conditions. By updating the language used to describe and talk about the patient experience in alignment with what is suitable for the patients themselves, this empowers patients with confidence when engaging with industry.  

However, language is just one rung of the ladder organizations must climb to build and foster trust with patient communities. Another key detail is that of feedback loops, where former trial participants are given product updates insofar as if the treatment was approved for market use, how widely used it is, etc. Improved communication from the outset of a trial design, all the way through to finalization and disseminating the results of the trial, are vital to sustaining positive patient relationships.  

Conclusion

Overall, an effective healthcare system goes beyond constraining 15-minute patient-physician windows and disparate communication channels. Consideration for how failure to address systemic, fundamental inefficiencies eventually impacts patient health is vital. Intertwined with this is the idea of patients as partners and empowering them with the best resources to maximize success when engaging with the healthcare system, and clinical research initiatives. 

To learn more about upcoming C3 Summits, or how you can optimize your patient engagement strategy, contact us today.