As a young adult with a disability, I hear the term, “self advocacy” a lot. My mother has always encouraged me to prioritize my own needs, and express them to other people. In the disability community, “nothing about us without us,” is a common slogan, used as a constant reminder that people with disabilities need to be involved in decisions about our own lives.
Self advocacy is often talked about in the context of education, employment, and other activities we engage in on a daily basis, but the truth is self advocacy is an important part of all aspects of life, and health care and health outcomes are no exception.
For a lot of people, conversations about what matters to them when it comes to their health may feel a little bit scary– because we often think of healthcare and related issues as topics that are best left solely to doctors, researchers, and other medical professionals– but the truth is self advocacy is just as important when it comes to your health needs as it is in any other situation.
It is important to be able to communicate with healthcare professionals what matters to you when it comes to your health, and it is essential that your needs, desires, and lifestyle are a central part of any health-related research or programs you may engage in.
Use your life and your experiences to guide your engagement in health research and outcomes so that health outcomes become applicable to your life, and not just something you discuss with your doctor. Remember that your experiences matter, and that research centered around patient outcomes is not only revolutionary, it is changing the face of healthcare because it ensures that what is being researched are things that have value to actual people experiencing various medical problems and conditions.
Even though healthcare research can sometimes sound complicated and technical, it is important to remember that self advocacy is essential to getting the most out of new technologies and treatments. It is important to feel empowered to ask questions of medical professionals, and to feel comfortable sharing with researchers why a certain issue has particular relevance to your life.
At its core, self advocacy is about being empowered to speak for yourself and have a say in decisions that will impact your life in some way.health-related research is definitely something that impacts everyone and it can be particularly powerful for people with disabilities, who may have been overlooked in research in the past.
To learn more about patient centered outcomes research (PCOR), and how you can use your experience, and self advocacy skills to improve choice and health outcomes, should