By Cari Maxwell, Kidney Advocacy Committee member
It was my privilege to be a guest speaker at Bayer Pharmaceuticals’ first Clinical Trial Patient Retention Summit in June 2018 near their headquarters in New Jersey. Bayer is constantly engaged in new research, with the hopes of developing additional treatment for patients that are managing various healthcare conditions. Embracing a patient-centric approach to disease research, the pharmaceutical company conducted a training meeting for their US and Canadian teams on two of their current research programs in Diabetic Kidney Disease, which hope to delay disease progression in patients at risk of losing their kidney function due to their history of diabetes and also demonstrate a risk reduction for cardiovascular events.
Through my role on the NKF Patient Advocacy Council, I met with Bayer’s clinical team to share my personal experience participating in a non-Bayer clinical drug trial yet also connected with kidney disease. Bayer saw the value in having an actual patient that had participated in a long-term trial speak to the group on what it is like to be a clinical trial patient. Their strong desire to help the rest of the Bayer team understand and reflect on the experiences of clinical trial participants was evidenced by the significant focus of the Summit specifically on patient retention means and methods.
In my time addressing the team, I placed a significant emphasis on trial leaders helping trial participants understand their role in the health community at large. When a patient enters a clinical trial program it can be overwhelming between the lengthy informed consents, getting adjusted to a new medication, and managing the frequency of in-clinic visits. When my own trial drug gained its FDA approval in April of this year, I received a lot of positive feedback, congratulations, and even sincere appreciation from patients and caregivers alike. I admitted to the Bayer team that it wasn’t until this approval and what followed for me personally that I realized I had a significant part in doing for others what they could not do for themselves. While I knew there was greater impact beyond my own health and the potential for others in the future to receive the drug, the FDA approval brought that more into focus. From a retention perspective, helping patients understand the critical role they play in a clinical trial may help retain those patients who could be on the fence about ending their study participation before a study is completed, and could help get those patients through difficult moments in their trial participation
In the end, it was a most rewarding experience to share my passion for clinical research, and to have the opportunity to talk about my own health journey. For me, my health story is incomplete without finding ways to turn my challenges into positive outcomes for myself and others. It was a great collaborative experience and I am glad I could contribute to the Retention Summit to help advocate for patient–centric approaches. Seeing patients’ needs being placed at the forefront of pharmaceutical industry decision-making is to be applauded, and I look forward to continuing the conversation in the pharma community to further enhance the patient experience.
I think it is great that you had the opportunity to participate and elaborate as a patient about your clinical trial experience. More people need to do this in order to advance treatments and care for those with kidney disease. Can you imagine the impact that would have? Much appreciation to your efforts and I wish you well in moving forward. I too am a KAC member and see first hand the many barriers patients and caregivers alike face.
Thank you for your comment, Bobbie. Glad to be serving with the same mission! Also, you are my new region leader! I look forward to getting to know you.