Why is it important to have patient partners as trial team members?

Patient partners play a vital role in promoting patient-centered healthcare, improving quality and safety, and driving positive changes within healthcare systems. They serve as bridges between healthcare providers/organizations, and the communities they serve. Specifically, Dial-Bicarb patient partners provide valuable insights into the experiences, needs, and preferences of those receiving dialysis services. They also offer unique perspectives that can identify areas for improvement within the dialysis systems and practices. These efforts enable healthcare providers and organizations to tailor dialysis services to be more patient-centered, improving the overall quality of care. Additionally, their involvement also ensures that the trial and the investigations carried out are meaningful and applicable to real-world contexts.

Patient partners, such as Brenden and Sue, offer a wealth of knowledge and experience and are integral members of the research team. Their lived experience provides them with a keen perspective on the impact of hemodialysis on patients’ lives. Their contributions to the team have been invaluable in shaping the trial protocol, consent model, patient flyers, website, data collection, adherence plan, site training and implementation materials, and knowledge translation plan.