When it comes to patient research
Written on February 8, 2014 by Advocacy Joe
“If you’re not at the table, you’re on the menu.” ~ Michael Enzi
For a long time I felt disconnected from the idea of “research”. The thought of being studied and placed under a microscope never felt right to me. I often thought researchers didn’t care about the people or subjects they were researching. Not to mention, that working on the front lines, it often felt like research dollars trumped practical solutions. When patients can’t afford drugs, or health insurance, it frustrated me that there was always money for research.
And the whole imbalance of power between researchers and patients really rubbed me the wrong the way. Think about it: who holds the power in that relationship? But what if we started to rethink the ways in which we engage in research. What if research is developed and informed by the very people who are being researched, the patients? This is how research could be used as a tool for advocacy, and suddenly, my old preconceived notions about research fly out the window. Now I’m intrigued and energized.
The Power of Research:
A way to silence patients is to deny our experiences. How many times have we heard: that’s not a symptom of your condition, or that isn’t a reaction from the drug. Patients live real life experiences, but they’re negated because there is no research. Because data doesn’t prove what we’re living through.
We live a society that data and measurable outcomes trump emotions and anecdotes. Data is power and data is trusted. To be heard, we need to turn our life into data. I don’t know how to do that, but there are really smart people who do and are working tirelessly to integrate patients’ perspectives and develop a new way of conducting meaningful, important research.
As patients, we must be a part of the solution. It is our moral imperative to help others. While we might not be able to donate money, attend a walk, or go lobby Congress, we can surely fill out a questionnaire about our experiences as patients.
This is about being strategic. Early in my life I heard a quote that has stayed with me, “If you’re not at the table, you’re on the menu.” We need to be at the table and we need to help guide research. Otherwise our issues and concerns as the very people living with the conditions that we have will be swept under the rug.
CreakyJoints recognizes the importance of this type of research, which is why we developed CreakyJointsPRO (Patient Reported Outcomes) – or CJPRO for short. We are counting on you, our community, to become engaged participants.
Research is a powerful advocacy tool. Learn how to use it: http://www.creakyjoints.org/research