Over 50 advocates tackled six key questions that face kidney patients. Their answers will inform NKF’s patient engagement strategy in 2016 and beyond. Some of the key points included:
Patients need to be involved in fighting kidney disease. No matter how you do it, get involved. If you have kidney disease you need to speak up. Some people can’t advocate for themselves, which makes it even more important that patients advocate for others.
Education is hugely important, whether it’s about medications, expectations, how to treat yourself and advocate for yourself. People also need to be able to engage with their health care team, and not be afraid to say “no” when they are unsure or uncomfortable.
Many of us didn’t know we were at risk until we were suddenly sick. That is why awareness and early detection are important. Education is also important among health care professionals. If a patient starts their kidney disease journey in the emergency room or by seeing a nephrologist, it’s too late.
Emotional wellbeing, and finding ways to help people stay positive, should also be a component of kidney patient health care.
There is a need for more peer mentoring and a better support system that focuses on the patients. There is often a disconnect between patients and doctors. We need to keep things simple, and encourage people to ask questions and understand their care. The overall message — keep it simple!
There should be better ways to access medical records and engage the health system. Professional health platforms should integrate labs, appointments, reminders and prescription information. It should be simple and easy to access because not everyone has a high-speed internet connection and many are not technologically savvy.
Kidney patients need to play a role in the development of drugs and treatments, but we need to be brought in before trials start. Drugs and therapy development should take into account our experiences and our opinions. It’s not only about effectiveness, it’s how it affects our whole life.
KAC members are taking part in the 2016 Kidney Patient Summit in Washington, DC. Learn more about KAC and find out how you can get involved in patient care.