Kidney stone disease has become increasingly prevalent in the United States, affecting 1 in 11 Americans, with the incidence doubling over a 15-year period. This common benign urological disease is estimated to contribute $1.24 billion to annual health expenditures in the next decade. Recurrence rates of kidney stones can be as high as 50% within 5 years.
The disease leads to recurrent, painful events, diminished quality of life, and increased risks of ionizing radiation exposure and surgical complications. Kidney stone disease affects a wide range of patients, including adults with no underlying health issues, children and adolescents, individuals with rare genetic diseases, those with physical disabilities, and the elderly.
Unfortunately, there has been a lack of patient inclusion in identifying future research needs, and existing guidelines for managing nephrolithiasis are supported by low-level evidence without considering outcomes that are meaningful to patients.
Recognizing the importance of engaging with patients, caregivers, clinicians, and researchers, the Kidney Stone Engagement Core (KSEC) was developed. Comprising 16 individuals, including clinicians, researchers, patients with kidney stones, a caregiver, and a patient advocate, KSEC aims to better understand the patient voice and support the kidney stone disease community.
Patient and stakeholder engagement is crucial in various aspects of clinical trial design, including identifying research questions, selecting relevant trial outcomes, designing patient-centered trials, and contextualizing results. While some decisions can be made through structured prioritization, others require open discussions and consensus building.
Working alongside patients and stakeholders has enabled KSEC members to connect with the broader Kidney Stone Disease community and influence future research directions. By ensuring that the concerns, opinions, and voices of patients and stakeholders are heard, KSEC helps guide research towards outcomes that are most relevant to the community.
Joining KSEC at the beginning of 2024 deepened my commitment to empowering others through effective communication and advocacy.
Email us your interest in becoming more involved with KSEC
