(UroToday.com) The 2022 International Kidney Cancer Symposium (IKCS) European Annual meeting included a session addressing non-clinical considerations for caring for the whole kidney cancer patient and a presentation by Dr. Rachel Giles discussing the role of advocacy in patient care. Dr. Giles started by highlighting that in 2022 the IKCC Network reaches over 1.2 million kidney cancer patients worldwide, with 48 affiliate organizations worldwide. This network also addresses unmet needs at the global level:
- Awareness of RCC/Advocacy for Best Practices: raising awareness, patient education, information
- Research: clinical trial design, patient reported outcomes, communication across the IKCC network
- Regulatory/HTA: providing a patient voice, perspective, insights, real-world evidence
- Emerging markets: support the needs of patients, organizations, associations
Ultimately, Dr. Giles notes that today’s reality of patient advocacy is as follows:
Patient advocacy also operates at the local/national, European, and global level:
- Local/national: information and support, national policy, awareness, access (reimbursement)
- European: EU policy, frameworks, systems, research collaboration, access (systems, inequalities), evidence generation
- Global: some European-based organizations are Europe-resident global coalitions
Dr. Giles emphasized that evidence-based advocacy should not be just opinions, but rather based on high level data:
The IKCC 2020 Global Patient Survey was a 35-question survey designed to identify geographic variations in patient education, experience and awareness, access to care, best practices, quality of life, and unmet psychosocial needs. The survey was distributed through patient organizations from October 29, 2020 through January 5, 2021 with independent data collection and analysis. There were 2,012 responses to the survey comprising 1,586 patients and 417 caregivers, across 41 countries in 13 languages. Overall, 44% of patients were metastatic, 33% had no evidence of disease, and 23% had localized kidney cancer. Key findings included that 42% of patients reported that the likelihood of surviving their cancer beyond 5 years was not explained to them, and 50% of younger-onset patients (<46 years) did not know their tumor subtype:
Additionally, 41% of respondents indicated that no one discussed clinical trials with them and 55% of respondents indicated that they ‘very often’ or ‘always’ experienced fear of recurrence:
As an example of the power of advocacy, Dr. Giles noted that initially the EMA in July 2018 had a negative opinion with regards to approving the combination of ipilimumab/nivolumab therapy for previously untreated metastatic RCC. However, by November 2018, the EMA issued a statement that they were reversing their negative opinion of combination ipilimumab/nivolumab therapy, in part because of the lobbying and advocacy of the IKCC Network.
Dr. Giles concluded her presentation by discussing the role of advocacy in patient care with the following take-home messages:
- Engaging patients leads to better clinical outcomes
- Patient organizations offer a variety of services
- Patient organizations can generate data
- Patient representatives are increasingly involved in grant writing/reviewing, clinical trials, manuscripts, tenure reviews and academic applications, ethical committees, resource allocation, health assessment technologies, and clinical guidelines
Presented By: Rachel Giles, PhD, University Medical Center Utrecht, Utrecht, Netherlands
Written By: Zachary Klaassen, MD, MSc – Urologic Oncologist, Assistant Professor of Urology, Georgia Cancer Center, Augusta University/Medical College of Georgia, @zklaassen_md on Twitter during the 2022 International Kidney Cancer Symposium (IKCS) Europe Annual Hybrid Meeting, Antwerp, Belgium, Fri, Apr 22 – Sun, Apr 24, 2022.