International Kidney Cancer Coalition (IKCC)

Global Patient Survey: Can a simple share help empower kidney cancer patients?   In January 2023, I took the role of Chair of the Medical Advisory Board of the International Kidney Cancer Coalition (IKCC). We are a group of clinical experts from around the globe with a mandate to provide scientific and clinical expertise to IKCC and support its commitment to evidence-based leadership and patient engagement.   As such, a focus has been increasing clinician-patient engagement through leadership and training programs, including our Clinical Leadership Workshops where clinicians and patient advocacy leaders come together to better understand patient engagement and how it improves patient outcomes.   While we continue to scale up the training program, how can we, members of the kidney cancer community, take steps to ensure our patients’ voices, values and experiences are included in all decisions about treatment and care? When we are already operating in resource- and time-strapped health systems, it can seem overwhelming.   But may I offer you a suggestion?   If you work with people affected by kidney cancer – patients, survivors or caregivers – please consider telling them about the IKCC Global Patient Survey on Kidney Cancer and Growths and encourage then to participate. The biennial survey is an opportunity for people to share their experiences and voice their insights related to access to care, quality of life, involvement in clinical trials, shared decision-making and more.    Since the first survey was launched in 2018, results have been instrumental to IKCC’s evidence-based initiatives. There have been published research papers, clinical conference presentations, educational resources, and more. Through these projects and programs, patients’ perspectives are reaching healthcare providers, government bodies and decision makers, industry partners and other stakeholders who influence patient care.   By encouraging survey participation, and investing just 20 minutes of their time, you are empowering the people in your clinical community. In one of 16 available languages, they can have their real-life experiences heard, counted and considered. And ultimately, they can help improve the lives of people affected by kidney cancer globally.   The survey is open till 15 November. You can find the IKCC Global Patient Survey on Kidney Cancer and Growths here: https://bit.ly/ikcc2024GPS

Dear patient organisations, health care professionals, patients and caregivers – we need your help! We want all people affected by kidney cancer worldwide to have the opportunity to share their insights and experiences to improve the lives of people with kidney cancer in an evidence-based way. It’s an ambitious goal – but when we work together, the sum of our strengths can make a global impact! YOU can help by sharing the IKCC Global Patient Survey on Kidney Cancer and Growths with the people you know who have been impacted by kidney cancer. The survey is open until 15 November. Why is this so important? It can seem we are always being asked for our thoughts, but this survey is different for the kidney cancer community. The results, based on the responses of thousands of people affected by kidney cancer, help ensure education, awareness and advocacy programs from Partner Organisations respond to the needs of people living with kidney cancer. Put simply – we are reducing the burden of kidney cancer. Furthermore, the results are foundational to our evidence-based initiatives. This includes published research papers, clinical conference presentations, and more. Through these projects and programs, patients’ perspectives are reaching healthcare providers, government bodies and decision makers, industry partners and other stakeholders who influence patient care. So, you can see why we are asking for your help now. Will you: - Share or reshare survey information on your social media channels. You can find IKCC’s socials at the following: - Facebook: https://lnkd.in/e-7fCGVa - X (Twitter): https://lnkd.in/egJQCsie - LinkedIn: https://lnkd.in/eNcMw9nq - Post a copy of the attached infographic  - Complete the survey (if applicable) Open until 15 November, the survey is available in 16 languages and can be completed in only 15 – 20 minutes. You can find the IKCC Global Patient Survey on Kidney Cancer and Growths here: https://bit.ly/ikcc2024GPS Thank you!