PCORnet Blog

Patient Involvement in Research: Innovative, Patient-Powered, Welcoming

Date: June 13, 2016

Author: Cherie C. Binns, RN BS MSCN, Research Committee Member for Multiple Sclerosis PPRN

Cherie Binns, received her nursing degree from Albany Medical Center, her degree in Gerontology from the University of Rhode Island, and is one of fewer than a thousand nurses worldwide to be certified in multiple sclerosis nursing. Cherie is a frequent presenter for patient education programs for multiple sclerosis and is a “Resource Finder” for many who find themselves “falling through the cracks.” Read more about Cherie Binns.

I’m a patient helping to change the culture of research and I am excited! It feels great to be empowered, encouraged, and a part of something larger than myself. I get to be a part of things I could only imagine someone else doing and do things I never really thought I could achieve. How did all this happen? I became part of a Patient-Powered Research Network (PPRN) that has a national and international membership. It is the brainchild of the Accelerated Cure Project for multiple sclerosis (MS) and is called, appropriately, iConquerMS™. I was asked if I would help out on a committee for a larger network, PCORnet, the National Patient-Centered Clinical Research Network, which is made up of 20 PPRNs and 13 CDRNs (Clinical Data Research Networks). This initiative of the Patient-Centered Outcomes Research Institute (PCORI) is designed to conduct health research faster, more efficiently, and at lower cost than ever before, and to do it with patients and other stakeholders as collaborators.

Whoa! I never saw myself in the research arena even as a test subject. I hated statistics classes in college. But then, between jobs, I was asked to lend my nursing expertise to coordinate a small clinical trial to try and find some sort of marker that showed that a drug was working in people with a chronic illness. That led to another project that put me in a conference center with more than a hundred other people who were committed to bringing a drug to market that would help people with gait problems walk more easily. I had been bitten by a bug of curiosity and excitement and felt intellectually stimulated and valuable for perhaps the first time in my life, or certainly for the first time in ages.

You see, for years I had been experiencing myriad symptoms that did not make sense: bone-crushing fatigue, visual disruptions, trouble walking, difficulty finding a word when trying to explain something (and more). It had sidelined my career as a home care case management nurse. Subsequently, these symptoms led to a diagnosis of MS, a disease that affects nearly half a million people in the United States and well over a million worldwide. Multiple sclerosis (MS) has no cure, but around the time of my diagnosis, a medication came on the market to help manage it. Today, there are twelve FDA-approved therapies available and more coming out in the next few years. Although I spent the better part of several years homebound, scooter dependent, and legally blind, proper management of my condition, change in lifestyle patterns, and education saw me improving considerably.

In the summer of 2014, I was approached by someone who had found me on LinkedIn when searching for people who might be a good fit for a research committee as part of a PPRN. This network was created to address research projects that had a direct impact on the MS population and would reach out to that particular group of people to ask what research was REALLY important to them and not just those in the research community. People wanted to know how to choose a therapy from the available choices. That information, to date, is not available but hopefully soon will be. “Why do women get MS at a rate almost three times that of men?” is another question being considered.

Today, there are PPRNs all over the country that are disease-specific, including some focused on rare diseases for which there are not yet any therapies. And hospitals, universities, clinics, and researchers are banding together to form CDRNs with combined resources to move the process more efficiently and with greater cost effectiveness. These CDRNs and PPRNs are working together within PCORnet, a “network of networks,” with energy, enthusiasm, cooperation, and resource-sharing to answer questions that will lead to greater access and uniformity in healthcare. They will lower costs and create faster, more efficient processes and protocols for doing research that gives us answers we need to live higher quality, healthier, and more productive lives.

You can be involved in patient-powered research as a person with a condition or a genetic likelihood of developing a specific illness, or as a caregiver, patient advocate, clinician, or researcher. All are welcome and encouraged to contribute thoughts, ideas, and skills to this amazing network that has come to include some of the most motivated, innovative, skilled, and empowered people in this country under the umbrella of PCORnet.

For more information go to www.PCORnet.org. To add your ideas and information to help find a cure for multiple sclerosis, go to www.iConquerMS.org.