Recently, our team had the pleasure of attending the 16th Annual Patient Recruitment and Retention Summit, a hallmark event in the field of clinical research and patient advocacy. Hosted in an intimate, knowledge-sharing environment, this summit brought together experts from across the globe to share insights, strategies, and innovations aimed at enhancing patient involvement in clinical research. We were proud to sponsor a booth, which served as a hub for discussions, networking, and sharing our contributions to the field. In this blog, we’ll share the themes that rose to the top in our discussions.
Challenges in patient recruitment and retention
Many experts shared their experiences of struggling to find the right patients at the right time and then providing them with a positive experience. The summit fostered many round-table discussions on where the patient recruitment funnel is leaking, why these "holes" occur and how we can engage with patients in the trial design process to help patch these up in advance. Across the board, many sponsors are looking to include the patient voice much earlier in the trial lifecycle and across the value chain through methods of PPI focus groups and patient advisory boards.
Successful disease management and support programs
One of the focal points of the summit was discussion around successful disease management and support programs in patient recruitment and retention. Speakers highlighted the importance of designing research initiatives that are not only scientifically rigorous but also patient-centric. When patients feel supported and their disease management needs are met, their willingness to participate in and adhere to research programs significantly increases. This session underscored the need for holistic approaches that consider the patient's journey from diagnosis through the lifecycle of the disease.
The patient’s voice: Amplifying impact through advocacy
Another compelling theme was the amplification of the patient's voice through advocacy in recruitment. The summit showcased inspiring stories of how patient advocates are making a tangible difference in the research landscape. By fostering an environment where the patient's voice is heard and valued, research initiatives become more inclusive, ethical, and impactful. These discussions served as a powerful reminder of the crucial role of patient advocates in bridging the gap between the scientific community and the patient populations they aim to serve.
Patient-centric registry development
Engaging patients and communities in registry initiatives was a key topic, with discussions focusing on patient-centric registry development. Experts shared their experiences and strategies for building registries that not only support research goals but also provide value to patients. This involves ensuring ease of access, privacy, and relevance to patient communities. The dialogue revolved around leveraging technology and community outreach to build registries that are both robust in data and rich in patient engagement.
Patient assistance programs
The summit also explored patient assistance programs, highlighting their role in enhancing access and participation through support initiatives. These programs are pivotal in breaking down barriers to participation, whether they be financial, logistical, or informational. By providing patients with the resources and support they need, these programs play a critical role in ensuring diverse and inclusive participation in clinical research.
Balancing speed and safety
A recurring theme throughout the summit was the challenge of balancing speed and safety in patient recruitment and regulatory compliance. In an era where expedited research is often necessary, maintaining high standards of safety and ethics is paramount. Discussions centred on strategies for navigating these challenges, ensuring that patient welfare remains at the forefront of rapid recruitment efforts.
The role of patient feedback and real-world data
Lastly, the summit explored the central role of patient feedback and real-world data in surveillance practices. Discussions emphasised the value of harnessing real-world experiences and data to inform research directions, improve study designs, and enhance patient safety. Through interactive workshops and discussions, participants gained insights into innovative methods and technologies (such as Sano’s Virtual Waiting Room) for integrating patient feedback and real-world evidence into their research methodologies.
Conclusion
The 16th Annual Patient Recruitment and Retention Summit not only provided us with valuable insights into the latest trends and strategies in patient recruitment and retention but also offered us the opportunity to connect with like-minded individuals and organisations. As we reflect on the learnings from the summit, we are inspired to continue our efforts in making precision medicine research more patient-centric, inclusive, and impactful. Through collaboration, innovation, and advocacy, we are committed to advancing the field for the benefit of patients worldwide. To learn more about how we're advancing precision medicine, please get in touch below.