How Is a Patient Powered Research Different from Traditional Research?

What’s Unique About a Patient Powered Research?

patient powered researchIf you are like most people, you probably aren’t familiar with a Patient Powered Research Network. A Patient-Powered Research Network, also known as PPRN, is a new concept in cancer research initiative led by the Patient-Centered Outcomes Research Institute.

According to FORCE Vice President of Community Affairs and Public Policy Lisa Schlager, PPRN is very different from traditional research. It gives the power back to the patient. Patients are engaged in every aspect of the research from the governance and the development of research questions to the dissemination of information.

Find out more from Lisa Schlager how patient powered research is different and how it might be beneficial to you.

This video has been brought to you by FORCE: Facing Our Risk of Cancer Empowered

Transcription

Lisa Schlager:  The Patient-Powered Research is different from traditional research in a number of ways.  Specifically, in traditional research, the patients were basically research subjects.  They would enroll in a clinical trial and they have no say and how that clinical trial was run or what the parameters were.  The Patient-Powered Research is very different.  The Patient-Powered Research is exactly what it says, the patient’s power that research. 

They are engaged in every aspect of the research from the governance and the development of research questions to the dissemination of information.  As an example for a young woman who might have breast cancer how is that young woman make the decision between a lumpectomy, a unilateral mastectomy, or bilateral mastectomy where did she get that information, how did she make that decision. 

If a woman is faced with removing her ovaries, how does see decide whether to keep her uterus or not or whether to take hormone replacement or not.  Where she get that information, is that information accurate, and how does she make this decisions and what are the long-term effects.  These are some of the questions that might be explored via Patient-Powered Research Networks. 

Another question might be if a new study comes out and it mentions an increase cancer risk for specific type of cancer.  How does the public respond?  Is that research that came out accurate and is it applicable to that community?  Well, that’s a good question.  The Patient-Powered Research Networks can explore these issues and also dispel on this information that might be put out into the patient community misleading patients to make bad decisions, so this is a great example of how PPRN or Patient-Powered Research Networks make a difference in our community and differ from traditional research.